Preparing for Medical Appointments with Chronic Illness
When you live with chronic illness, medical appointments can become such a regular part of life that you almost develop a whole system for navigating them!
From keeping track of symptoms, medications and investigations to remembering everything you want to discuss, researching specialists and advocating for your needs, there's often an enormous amount of preparation involved before you even get to the appointment itself.
When you're living with multiple complex health conditions, it can be particularly challenging trying to communicate years of medical history in a short consultation, especially when symptoms overlap, affect different body systems or aren't necessarily visible.
I've been navigating specialist appointments since my twenties, when I was first diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS) and several associated conditions, and over the years I've developed a whole range of strategies that make the process feel a little more manageable.
I've also had plenty of experiences where I've left an appointment and realised I'd forgotten to mention something important, hadn't asked the questions I wanted to ask, or wasn't completely sure what was supposed to happen next.
SO frustrating, particularly when you've waited months for an appointment!
So I wanted to share some of the things I've learnt along the way, from preparing beforehand to advocating during consultations and keeping track of everything afterwards.
I've also created a free editable medical appointment preparation template, which you can personalise with your own medical history, symptoms, questions and notes.
Hopefully it can help take some of the mental load out of navigating healthcare, particularly when you're already dealing with pain, fatigue, brain fog or other symptoms that make the process that bit harder.
1. START WITH WHAT YOU WANT TO GET OUT OF THE APPOINTMENT
Before an appointment, I find it really useful to take a moment to think about what I'm actually hoping to achieve. Sometimes we're looking for a diagnosis, sometimes we need help managing an existing condition, and other times we're trying to understand a new symptom or explore different treatment options.
When you've got multiple things going on, it's easy to go into a consultation with a huge amount of information but without a clear idea of what you most need to discuss.
I'd recommend writing down your main concerns in order of priority.
For example:
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A new or worsening symptom you'd like investigated.
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A current treatment that isn't helping or is causing side effects.
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Questions about a diagnosis or test result.
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Difficulties managing symptoms in daily life.
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A referral to another specialist or service.
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Additional support or reasonable adjustments you might need.
I find it helpful to identify the two or three things that matter most, particularly when appointment times are limited.
That doesn't mean everything else is unimportant, but it can help make sure the biggest concerns don't get forgotten if you run out of time.
If you've got a particularly complex history, it might be worth asking when booking whether a longer appointment is possible.
2. PREPARE A SUMMARY OF YOUR MEDICAL HISTORY
When you have several chronic health conditions, trying to explain your medical history from scratch can feel like a mammoth task. I have diagnoses affecting multiple body systems, from connective tissue and autonomic nervous system issues to migraine, gastrointestinal conditions and MCAS.
Whilst some of these conditions might seem unrelated at first, they can affect how symptoms present, which treatments are suitable and how different medical procedures need to be approached.
Over the years I've learnt how helpful it can be to have all the key information written down in one place.
I'd consider including:
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Your diagnosed medical conditions.
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Relevant previous surgeries, procedures or hospital admissions.
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Your regular medications, doses and timings.
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Allergies, sensitivities and previous reactions.
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Important investigation results or specialist findings.
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Any relevant family medical history.
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Details of specialists or departments involved in your care.
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Accessibility requirements or precautions clinicians should be aware of.
You obviously don't need to give every single detail to every healthcare professional.
For example, a physiotherapist might need different information from a gastroenterologist. But having a master document means you can pull out what's most relevant without trying to remember everything on the spot.
My tip: Keep a short summary that can be scanned quickly, with the more detailed information available separately.
That way, you can communicate the essentials without handing somebody an enormous document to read during a short appointment.
3. EXPLAIN HOW YOUR SYMPTOMS AFFECT DAILY LIFE
I think this is one of the most important things I've learnt about medical advocacy. It's one thing to tell somebody that you're experiencing pain, dizziness, fatigue or nausea. But that doesn't necessarily communicate how much those symptoms are affecting your ability to function. When symptoms are invisible, or when you've become very accustomed to managing them, it's surprisingly easy to underestimate the impact when explaining them to somebody else.
For example, I could tell a doctor that my hEDS causes joint pain and instability.
But what does that actually look like in daily life?
For me, it can mean that my joints partially dislocate while walking, bending, carrying things or even sitting in certain positions.
Sometimes I can walk for an hour, and other times a joint can suddenly subluxate and leave me unable to continue walking.
Likewise, saying that I experience vestibular migraine doesn't necessarily explain that bending forwards, travelling in a vehicle or sitting without proper neck support can trigger symptoms that leave me needing to rest for hours.
These kinds of practical examples can give a much clearer picture of what somebody is actually experiencing.
You might want to consider:
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What activities have become difficult or impossible?
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Are your symptoms affecting sleep, work, eating, mobility or personal care?
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Do you need help with tasks you previously managed independently?
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Are there things you avoid because they trigger symptoms?
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How much time do you spend resting or recovering after activities?
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Are your symptoms unpredictable or variable throughout the day?
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What adaptations or aids do you rely on?
Something I think is particularly important with variable conditions is explaining both your better and worse days.
Just because you can do something occasionally doesn't necessarily mean you can do it consistently, safely or without consequences.
4. KEEP TRACK OF SYMPTOMS AND PATTERNS
When symptoms come and go, or when you experience several different things at once, trying to remember exactly what's happened over the past few weeks or months can be surprisingly tricky.
Particularly if you experience brain fog!
Depending on the symptoms you're discussing, it might be helpful to keep a short diary or record of:
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When the symptom started.
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How often it happens.
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How long episodes last.
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The severity and nature of the symptom.
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Possible triggers or patterns.
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Anything that makes it better or worse.
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Associated symptoms.
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Treatments you've tried and whether they've helped.
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How the symptoms compare with your usual baseline.
You might also find photographs useful for things like visible rashes, swelling or other intermittent physical changes. Iif you use a wearable device or monitor certain health measurements, relevant records might help provide additional context.
I'd avoid feeling that you need to track absolutely everything, though. When you already have a lot of symptoms to manage, monitoring every little detail can become another exhausting task in itself.
Sometimes a few specific examples or a short summary of patterns is more useful than pages of raw data.
5. ORGANISE YOUR QUESTIONS BEFOREHAND
Have you ever come out of an appointment and suddenly remembered the one question you really wanted to ask?
I've definitely done this!
When consultations are short, or the conversation takes an unexpected direction, it can be particularly easy to lose track.
I like to prepare questions beforehand so that I've got something to refer back to.
Depending on the appointment, you might want to ask:
Understanding your symptoms
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What could be causing these symptoms?
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Are there other explanations we should consider?
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Could this be related to one of my existing conditions?
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What symptoms would suggest something more urgent?
Investigations and diagnosis
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Would any investigations be useful?
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What would the results tell us?
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Are there limitations to the tests?
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What happens if the results come back normal but the symptoms continue?
Treatment and management
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What treatment options are available?
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What are the potential benefits and risks?
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Are there alternatives if I can't tolerate a particular medication?
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Could this treatment interact with my other conditions or medications?
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What can I do to manage symptoms in the meantime?
Follow-up
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What happens next?
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When should I expect results?
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Who will contact me?
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When should I arrange another appointment?
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What should I do if symptoms worsen before then?
Obviously not all of these will apply to every appointment, but having a few prepared questions can make the conversation feel much more manageable.
6. CONSIDER YOUR ACCESSIBILITY NEEDS BEFORE YOU GO
Medical appointments themselves can sometimes be surprisingly challenging when you're chronically ill.
For me, travelling to an appointment can involve cervical collar use because of my neck instability, managing motion sickness and vestibular migraine, avoiding fragrance exposure and making sure I have the right cushions and supports.
Sometimes the journey and waiting around can be more physically demanding than the appointment itself!
I'd recommend thinking about what you might need before booking or attending.
For example:
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Could the appointment be carried out by telephone or video if an in-person examination isn't necessary?
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Do you need step-free access or support getting around the building?
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Would additional time or a quieter waiting area help?
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Do you need support with communication or processing information?
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Are there particular examination positions that could cause pain or instability?
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Do you require precautions around fragrance, chemicals or other triggers?
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Would you benefit from having somebody accompany you?
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Will you need time to rest or recover after the appointment?
You can ask the service about reasonable adjustments in advance, rather than waiting until you arrive and hoping everything will be suitable. If an examination is being suggested, it's absolutely okay to explain any physical limitations or concerns beforehand.
7. BRING SOMEBODY WHO CAN SUPPORT OR ADVOCATE FOR YOU
This is something I've come to appreciate SO much more over the years.
Even if you're very confident advocating for yourself, there can be times when you're exhausted, in pain, overwhelmed or struggling to take in information. Sometimes simply having another person there can make an enormous difference.
For me, having my husband involved in medical discussions has been incredibly helpful, particularly during my recent birth admission when I wasn't always in a position to speak up for myself.
If you have someone you trust who can accompany you, they might be able to:
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Help explain your medical history or concerns.
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Remind you about questions you've prepared.
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Take notes during the consultation.
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Ask for clarification if something isn't clear.
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Help you remember what's been agreed.
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Offer support if the conversation becomes emotional or overwhelming.
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Obviously, not everyone has somebody available, and it's absolutely possible to advocate for yourself without an accompanying person. You could also ask whether you're able to take notes, receive information in writing or record the consultation with the clinician's agreement.
My tip: If somebody is coming with you, have a quick conversation beforehand about what you'd like their role to be.
That way, they know whether you want them to speak up, take notes or simply be there for support.
8. DON'T BE AFRAID TO ASK QUESTIONS OR SEEK CLARIFICATION
Something that I've learnt from navigating complex healthcare is that medical appointments don't have to be one-sided conversations. Healthcare professionals bring their clinical expertise, but we also bring important knowledge about our own bodies, symptoms and lived experiences.
And sometimes there's a lot of uncertainty, particularly with conditions that aren't well understood or symptoms that don't fit neatly into one diagnosis.
I think it's completely reasonable to ask why a particular treatment or investigation is being recommended, what alternatives exist and how a decision has been reached.
If something doesn't make sense, it's okay to say so.
If you haven't understood an explanation, ask for it to be repeated or written down.
If you feel that an important concern hasn't been addressed, you can ask what the next step should be.
You might find phrases like these helpful:
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"I'm not sure I've understood that properly. Could you explain it another way?"
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"My main concern is how this is affecting my daily life. Could we discuss what might help?"
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"I'm worried that this symptom is different from my usual baseline. What else should we consider?"
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"Could you explain the benefits and risks of that option, particularly with my other conditions?"
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"If the tests come back normal but I'm still experiencing these symptoms, what would happen next?"
I think sometimes we can feel intimidated asking questions, particularly if we've previously had difficult medical experiences. But asking questions isn't being difficult... It's part of understanding and participating in decisions about our own care.
9. PREPARE FOR THE POSSIBILITY THAT THE APPOINTMENT DOESN'T GO AS EXPECTED
Something I learnt particularly strongly through my recent hospital experience is that medical opinions and recommendations can sometimes vary. You might receive a different perspective from another specialist, or the proposed plan might change as new information becomes available. Whilst that can feel frustrating or confusing, sometimes there isn't one simple answer.
I've found it helpful to approach appointments with an open mind, whilst still being clear about my symptoms, concerns and preferences.
For example, if a clinician suggests a treatment that you're hesitant about, you might want to ask:
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Why is this the preferred option?
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What evidence or findings support that recommendation?
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Are there other approaches?
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What are the possible consequences of waiting?
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Would another specialist's input be helpful?
If there's uncertainty or disagreement, you can ask for the reasoning to be documented and whether a further review or second opinion would be appropriate.
The aim isn't to challenge every recommendation, but to understand the options and feel involved in your care. Sometimes the most useful outcome of an appointment is simply agreeing on the next step, even if you don't leave with all the answers.
10. KEEP TRACK OF WHAT HAPPENS AFTER THE APPOINTMENT
This is one section I'd particularly encourage people not to overlook. It's easy to spend ages preparing for an appointment, finally attend it, and then realise a few weeks later that you're not quite sure what was agreed!
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Was a referral supposed to be made?
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Who was ordering the blood tests?
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When should you expect the results?
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Were you meant to follow up with your GP or would the hospital contact you?
I'd recommend writing down the key outcomes, either during the consultation or as soon as possible afterwards.
That might include:
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Any diagnoses or explanations discussed.
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Investigations requested.
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Referrals agreed.
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Medication changes or treatment recommendations.
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Results you're waiting for.
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Follow-up appointments.
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Who is responsible for the next step.
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When you should expect to hear back.
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What to do if your symptoms change.
If you receive a clinic letter afterwards, it can also be useful to check that it accurately reflects what was discussed, particularly if your medical history is complicated. If something hasn't happened within the expected timescale, having a record makes it much easier to follow up.
I like the idea of having a dedicated section for this in the appointment preparation template, so everything relating to one appointment can stay in the same document.
11. GIVE YOURSELF TIME TO RECOVER
This is something that can be SO easy to overlook. When you live with chronic illness, a medical appointment isn't necessarily just a short conversation with a doctor.
It might involve getting ready, managing transport, spending time in a hospital environment, dealing with sensory triggers, having examinations, processing lots of information and then travelling home again. All of that can be exhausting.
Sometimes we might also receive difficult news, have an emotionally challenging conversation or feel frustrated if things haven't gone as hoped.
So if you're able to, I'd really recommend building some recovery time into your plans.
For me, that might mean leaving the rest of the day free, having food prepared, spending time in my recliner or simply allowing myself to rest without feeling that I need to be productive afterwards.
We often put an enormous amount of energy into navigating healthcare. I think recognising that the process itself can take a toll on our bodies and minds is an important part of looking after ourselves too.
FREE MEDICAL APPOINTMENT PREPARATION TEMPLATE
To help make some of this preparation a little easier, I've created a free editable medical appointment template that you can personalise for your own circumstances. It includes space to organise your main concerns, symptoms, relevant medical history, medications, questions and what you're hoping to get out of the consultation.
There's also a section for taking notes during the appointment and recording what happens afterwards, including referrals, investigations and follow-up actions.
You don't have to fill in every section, and not everything will be relevant to every appointment.
The idea is simply to have everything you might need in one place, so you can spend less energy trying to remember it all and more time focusing on the conversation itself.
I hope it helps make your next appointment that little bit more manageable!
Preparing for a Hospital Stay with Chronic Illness
Going into hospital can be daunting at the best of times, but when you live with chronic illnesses, disabilities or complex medical needs, there's often an enormous amount of extra preparation involved that people might not even think about.
From managing regular medications and making sure staff understand your conditions, to organising reasonable adjustments, planning for flare-ups and preparing for situations where you might not be well enough to advocate for yourself. Whilst we can prepare SO much in advance, sometimes things don't go quite as expected!
I experienced this firsthand when I went into hospital for the birth of my first baby in 2026. What was supposed to be an induction ended up becoming a two-week admission, an emergency C-section and a serious infection, alongside managing my existing conditions.
It was my first hospital stay longer than one night, and despite spending months meticulously preparing for it, there were still SO many things I learnt along the way.
Whilst my admission was maternity-related, a lot of the preparation and lessons apply to any hospital stay, whether it's for planned surgery, investigations, treatment or an unexpected emergency.
So I've collated some of the things I'd recommend considering if you're preparing for an admission with chronic illness, based on what helped me, what I'd do differently and what I wish I'd known beforehand.
1. PREPARE A MEDICAL INFORMATION DOCUMENT
One of the most useful things you can do is prepare a document that clearly communicates your medical history and individual requirements.
When you have several conditions affecting different body systems, it can be exhausting trying to explain everything from scratch to every new doctor, nurse or member of staff.
Iit's not always possible to do this yourself, particularly when you're experiencing pain, fatigue, brain fog, medication side effects or are simply too unwell to communicate properly.
I'd recommend having a document that includes:
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Your diagnoses and relevant medical history.
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Your current medications, doses and usual timings.
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Allergies, sensitivities and any previous medication or anaesthetic reactions.
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Medical devices, mobility aids and supports you use.
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Important handling, positioning or accessibility requirements.
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Any particular symptoms or complications staff need to be aware of.
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Details of your usual baseline, including symptoms that might otherwise be mistaken for something new.
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Your emergency contacts and relevant specialist teams.
I'd also consider adding a short section about how your conditions interact with one another.
For example, I have hEDS, cervical instability, PoTS, vestibular migraine and MCAS, among other conditions.
Something that might help one condition can sometimes trigger another, so it's important that staff understand the bigger picture rather than considering each diagnosis in isolation.
My tip: Make a short, easy-to-scan summary for urgent situations, with a more detailed document available for anyone who needs further information.
You could also have a digital copy on your phone and printed copies in your hospital bag, just in case.
2. MAKE SURE INFORMATION IS SHARED BETWEEN STAFF AND SHIFTS
This was one of my biggest takeaways from spending two weeks in hospital. During a long admission, you might see dozens of different healthcare professionals, with doctors and nurses changing between shifts, wards and departments.
Even if you've explained something thoroughly to one person, it doesn't necessarily mean everyone who looks after you afterwards will have the same information.
During my maternity admission, a guide was prepared for staff covering my MCAS and individual requirements, which was particularly important because of my severe allergies and the precautions needed throughout my stay.
But I also learnt how exhausting it can be when you're continually having to advocate for yourself, particularly when you're becoming increasingly unwell.
If you're preparing for a hospital stay, I'd recommend asking in advance:
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Can my medical requirements be clearly documented in my hospital records?
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Can the key information be included in nursing handovers and shift changes?
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Is there a way to flag important allergies, handling requirements or reasonable adjustments?
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Who will be coordinating my care if several departments or specialists are involved?
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Can I have a named person or team to contact if something isn't being communicated properly?
Having a document is helpful, but making sure the information actually reaches the people caring for you is just as important.
3. DISCUSS REASONABLE ADJUSTMENTS BEFORE YOUR ADMISSION
Something I wish more people knew is that reasonable adjustments aren't limited to wheelchair access.
Depending on your conditions, you might need changes to the environment, equipment, communication, timing or how staff provide care.
For example, that could include:
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A quieter environment if you have sensory sensitivities, migraine or neurological symptoms.
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Access to an appropriate bed, pillows or positioning supports.
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Support with mobility, transfers or getting to the bathroom.
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Additional assistance with personal care.
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Adjustments to minimise unnecessary standing or walking.
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Longer conversations or written information if you experience brain fog or difficulty processing information.
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Allowing a carer or advocate to support communication where appropriate.
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Additional precautions around medical equipment or physical handling.
With my EDS and cervical instability, I needed staff to understand that moving or positioning my body could potentially cause joint subluxations. With MCAS, the environment itself was an enormous consideration, from fragrance exposure to bedding, cleaning products and medical equipment.
Not everyone will need the same adjustments, even if they have exactly the same diagnosis.
I'd recommend contacting the relevant department before a planned admission and being as specific as possible about what you need and why.
You can also ask about involving the hospital's accessibility, disability support or Patient Advice and Liaison Service (PALS) team.
4. PLAN YOUR MEDICATIONS AND MEDICAL SUPPLIES
If you take regular medications, particularly multiple medications throughout the day, it's worth planning how these will be managed during your admission. I take a range of medications for my chronic illnesses, so ensuring these would continue throughout my stay was a big part of my preparation.
Some things I'd consider asking beforehand:
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Will the hospital supply my usual medications, or should I bring them in their original packaging?
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Are any of my medications specialist, unusual or potentially difficult for the hospital to source?
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How will medication timings be managed?
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What happens if I'm unable to swallow medication or need to fast before a procedure?
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Are there alternatives if I can't tolerate a particular formulation?
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How will any rescue medications be accessed if needed?
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Are there any potential interactions between my regular medications and the proposed treatment?
It's also worth considering products and equipment that aren't technically medications but are important for managing your conditions.
For example, compression garments, braces, migraine devices, specialist pillows, nutritional products or other equipment you regularly depend on.
One thing I learnt: Prepare for the possibility of staying longer than expected. I initially went into hospital expecting a very different experience from the one I ultimately had!
If you rely on specialist supplies that aren't easily available, having a contingency plan for an extended stay could save a lot of stress.
Of course, any medications you bring should be checked with the hospital team, and you should agree how they're stored and administered rather than simply taking them independently.
5. THINK ABOUT YOUR ENVIRONMENT AND COMFORT
Hospitals aren't necessarily designed with every chronic health condition in mind. There can be bright lights, noise, unfamiliar mattresses, strong fragrances, temperature changes, interruptions throughout the night and limited opportunities to rest.
For some people, these might be minor inconveniences, but with certain conditions they can genuinely worsen symptoms.
I'd recommend thinking about your typical daily setup at home and what you rely on to make yourself comfortable.
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Are there particular pillows or cushions you need?
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Do you require neck or spinal support?
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Are you particularly sensitive to noise, light or smells?
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Do you struggle with temperature regulation?
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Do you use specific products to manage pain or sensory symptoms?
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For my admission I brought my own pillows, linens and a whole range of other items that I rely on because of my allergies, instability and sensitivities.
I also had a very specific environment protocol due to MCAS, which you can read more about in my separate hospital preparation guide.
You obviously won't be able to recreate your entire home setup in hospital, and not everything can be accommodated, but identifying the things that make the biggest difference to your symptoms is a good place to start.
6. PREPARE FOR FLARE-UPS AND UNEXPECTED CHANGES
Even if you're going into hospital for something completely unrelated to your chronic illnesses, the admission itself can sometimes trigger symptoms.
Lack of sleep, stress, unfamiliar environments, changes in routine, physical examinations, missed meals and reduced mobility can all affect different conditions in different ways.
I'd consider discussing with your team what would happen if one of your existing conditions flared during the admission.
For example:
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What happens if you experience a severe migraine?
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What if you develop an MCAS reaction?
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What if you have a joint subluxation or struggle with mobility?
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What if you become too nauseous to eat or take medication?
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What if your usual symptoms make it difficult to recognise a new problem?
It might also be useful to prepare a small flare-up toolkit with your usual comfort items and agreed management strategies.
One important distinction is that new, worsening or unusual symptoms shouldn't automatically be put down to your existing conditions.
When you live with chronic illness, it can become so normal to experience pain and other symptoms that sometimes we almost expect to feel unwell.
But being chronically ill doesn't mean that everything new is necessarily part of our usual baseline. If something feels different or concerning, it's important to tell the medical team and have it assessed.
7. HAVE SOMEONE WHO CAN ADVOCATE FOR YOU
I genuinely don't know how I would have navigated my birth admission without my husband advocating for me throughout the experience.
There were times when I was exhausted, in pain, unwell and struggling to process everything that was happening.
That's when having somebody who already understood my medical history, boundaries and preferences became SO important.
Even if you're usually very confident advocating for yourself, there may be moments during a hospital admission when you're not in a position to do so.
If possible, I'd recommend having a trusted person who knows:
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Your main diagnoses and medical requirements.
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Your allergies and important safety precautions.
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Your regular medications and relevant history.
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Your wishes and preferences around treatment.
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The questions you'd want asked if plans change.
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What your usual baseline looks like.
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When something isn't normal for you.
You can also discuss in advance how you'd like them to support you, whether that's helping communicate your needs, taking notes, asking questions or simply being there when things become overwhelming.
It's worth checking the hospital's visiting and carer arrangements beforehand, and ensuring any appropriate consent or formal arrangements are in place if you want somebody involved in medical discussions.
8. PREPARE QUESTIONS FOR WHEN THE PLAN CHANGES
Something I learnt during my birth experience was that preparation doesn't give us control over every eventuality.
I had spent months researching, writing an incredibly detailed birth plan and preparing for multiple scenarios.
But even with all of that, things changed enormously.
One of the most valuable things I learnt was the importance of being able to reassess decisions as new information becomes available.
Medical recommendations can also vary between professionals, particularly when decisions involve several different conditions or when the benefits and risks aren't straightforward.
That doesn't mean medical advice should be ignored, but it does mean we can ask questions and take an active role in understanding our care.
Some questions I find useful include:
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Why are you recommending this treatment or procedure?
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What are the expected benefits?
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What are the risks, particularly considering my other conditions?
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Are there alternatives?
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What might happen if we wait or don't proceed?
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How urgently does this decision need to be made?
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Can we involve a specialist who understands my condition?
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What would make you recommend a different approach?
Obviously, in a genuine emergency there may not always be time for lengthy discussions.
But where there is time, I think understanding the reasoning behind a recommendation can make a huge difference to feeling informed and involved.
Changing the plan isn't failure.
Sometimes it's exactly the right decision based on the circumstances you're facing.
9. SPEAK UP WHEN SOMETHING DOESN'T SEEM RIGHT
This is another lesson that has really stayed with me since my birth experience.
During my induction, we'd noticed an unusual smell associated with my bleeding and raised it with a midwife.
Later, after developing a serious infection, I found myself reflecting on whether we should have raised our concerns again or asked for further assessment.
I don't know whether it would have changed anything, and it's impossible to say what caused what retrospectively.
But I do know that the experience reminded me how important it is to speak up when something seems different or concerning.
I think when you live with complex health conditions and already have to advocate for SO many things, you can sometimes feel reluctant to keep asking questions or raising concerns.
You might worry about making a fuss. Or you might convince yourself that you're overthinking something.
But you deserve to have your concerns heard and taken seriously.
If something doesn't feel right, communicate it clearly, explain what's changed from your normal baseline and ask what assessment might be needed.
If you're still worried after an initial conversation, it's okay to raise it again or ask for a senior review.
10. PLAN FOR DISCHARGE AND RECOVERY TOO
It's easy to focus all your preparation on the admission itself, but I think planning for what happens when you get home is just as important.
Depending on why you've been admitted, you might need extra support with mobility, personal care, preparing food, household tasks or managing your existing conditions whilst recovering.
With chronic illness, recovery can be particularly complicated when you're already managing pain, fatigue, dysautonomia or other symptoms day to day.
Before leaving hospital, I'd recommend making sure you understand:
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What treatment you've received and whether there were any complications.
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Any new medications or changes to your existing prescriptions.
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What symptoms to expect during recovery.
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Which symptoms require urgent medical attention.
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Any wound care, rehabilitation or mobility restrictions.
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What follow-up appointments, tests or results are outstanding.
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Who to contact if you have concerns after discharge.
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Whether additional support, equipment or adjustments are needed at home.
I'd also make sure you have a copy of your discharge information, and that any necessary follow-up with your GP or specialists is arranged.
After my C-section and infection, recovery involved much more than simply healing from surgery, so having a clear understanding of the next steps became particularly important.
11. REMEMBER THAT PREPARATION IS ABOUT HAVING OPTIONS, NOT CONTROLLING EVERYTHING
If there's one thing my experience has taught me, it's probably this. We can spend weeks or months preparing for an admission, researching every scenario, creating documents, organising medications and trying to anticipate everything that might happen.
All of that preparation can be incredibly valuable. But we can't necessarily control how our bodies respond, what complications might arise or how long recovery will take.
For me, the preparation was still absolutely worthwhile, even though the admission unfolded nothing like I'd expected.
It helped communicate my medical needs, gave staff information they wouldn't otherwise have had immediately available, and meant my husband could advocate for me when I couldn't.
So I'd encourage anyone with complex health conditions to prepare as much as is helpful and manageable for them.
But also remember that you don't have to anticipate absolutely everything.
The goal isn't to make a hospital stay completely predictable.
It's to make sure your needs are understood, your preferences are communicated and you have support available when things don't go to plan.
Sometimes that can make an enormous difference!
CHRONIC ILLNESS HOSPITAL STAY PREPARATION CHECKLIST
Here's a summary of things you might want to consider when planning an admission.
Medical information
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Prepare a medical history summary.
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List all diagnoses, medications and allergies.
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Document relevant previous complications and reactions.
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Record your usual symptoms and baseline.
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Include specialists and emergency contact details.
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Keep printed and digital copies.
Communication and advocacy
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Contact the hospital about your medical requirements.
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Discuss reasonable adjustments.
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Ask how information will be shared during staff handovers.
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Identify an advocate or support person if possible.
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Discuss consent and communication preferences.
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Prepare questions about treatments and alternative options.
Medications and equipment
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Confirm arrangements for regular medications.
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Discuss rescue medications and emergency plans.
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Check whether specialist supplies are available.
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Prepare necessary medical devices and supports.
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Make a contingency plan for a longer admission.
Comfort and accessibility
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Consider pillows, cushions and positioning aids.
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Discuss mobility and physical handling requirements.
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Identify sensory and environmental triggers.
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Plan for dietary requirements.
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Prepare a small flare-up toolkit.
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Consider how rest and sleep might be affected.
Discharge and recovery
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Discuss the expected recovery process.
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Understand medication changes.
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Confirm follow-up appointments and outstanding results.
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Request clear written discharge instructions.
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Know what symptoms require medical attention.
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Organise support at home if needed.
Everyone's needs will look different, so this is just a starting point to personalise to your own circumstances.
And if your admission is unplanned, don't worry about having every single thing on this list. Even a short medical summary and somebody who understands your needs can be incredibly useful.
The MCAS Hospital Prep Guide
Everything I did to prepare for a hospital admission with MCAS, severe fragrance sensitivities, allergies and other chronic illnesses
Having MCAS can make any hospital admission a lot more complicated. There are SO many things that can potentially trigger a reaction, from fragrances and cleaning products to hospital linens, food, adhesives, gels and products used during procedures.
I recently spent two weeks in hospital for the birth of my first baby, and because of my MCAS, allergies and other chronic illnesses, I did a HUGE amount of preparation beforehand to try and make the environment as safe and manageable for me as possible.
A lot of my preparation was obviously specific to pregnancy and birth, but I realised afterwards that so much of what I did could be useful for anyone with MCAS, allergies or chemical sensitivities preparing for a hospital admission.
So I've collated everything I did, plus the things I learned from actually being in hospital for much longer than expected, into one place for you.
You absolutely don't need to do everything on this list. MCAS is incredibly individual and we can all have completely different triggers, allergies and levels of sensitivity. This is simply what I did for MY known triggers and circumstances, and hopefully it can act as a prompt for things you may want to consider when preparing for your own hospital stay.
I've also included a big master checklist further down that you can copy and paste into your Notes app and alter to suit you.
Speak to the hospital as early as you can
One of the biggest things that helped me was starting these conversations BEFORE I actually arrived at hospital.
Because my admission was for birth, I got in touch with the Birth Options team during my third trimester and shared my complex medical history, allergies and the specific adjustments I was likely to need.
This gave us time to work through what I might need rather than trying to explain everything for the first time whilst I was already in hospital and giving birth.
If you're preparing for another type of planned hospital admission, I'd find out who you can speak to beforehand about allergies and reasonable adjustments.
Some things you may want to discuss include:
• Your known allergies and MCAS triggers
• Fragrance and chemical sensitivities
• Medication allergies or previous reactions
• Contact allergies, including adhesives and antiseptics
• Food allergies and dietary requirements
• Products you know you can't tolerate
• Products you've previously used safely
• Whether a private room may be possible
• Any other conditions that affect your care, mobility, positioning or handling
For example, I also have hEDS, so my preparation wasn't only about MCAS. I needed staff to understand the additional considerations around my joints and positioning too.
If you have multiple conditions, I'd think about how they interact rather than preparing for each one completely separately.
Make your important information REALLY obvious
This was one of the things I found particularly helpful.
I didn't want to rely on every member of staff finding the right section of my medical notes, especially as staff changed constantly throughout such a long admission.
My hospital actually created a physical laminated resource pack for staff.
This included the detailed birth plan I had provided, alongside a guide to MCAS that the hospital created to help staff understand the condition and how it related to my care.
Everything was printed and laminated so it could stay with me and be easily referred to during staff handovers and shift changes.
The information my hospital prepared for staff as part of my MCAS resource pack:
I think this is SUCH a good idea for anyone with a condition that isn't necessarily going to be familiar to every member of staff looking after them.
If you're preparing for an admission, you could ask whether something similar can be created or kept with you.
Even if your hospital isn't able to create its own guide, you could ask whether a short summary you've prepared yourself can be kept somewhere obvious and easily accessible to staff.
The important thing for me was that this information wasn't ONLY buried somewhere within my medical records. There was something physical that staff could actually pick up and read.
I also put a sign on my hospital door
I created a sign for the outside of my room so that some of my most important requirements were visible BEFORE somebody entered.
The sign outside my hospital room. I kept it simple so staff could see the most important things at a glance, particularly avoiding perfume and fragranced products, checking before using products on me and gentle handling because of my hEDS.
For me, this was particularly important for fragrance.
There isn't much benefit in explaining that perfume can trigger you once somebody wearing a lot of it is already standing next to your bed!
I deliberately didn't try to fit my entire medical history onto the sign either.
The door sign was there for the things somebody needed to know immediately, while the more detailed information was available in the laminated resource pack.
If I were simplifying the system I used, I'd think of it like this:
DOOR SIGN: immediate precautions someone needs to know before entering or doing something.
ONE-PAGE GUIDE: the essential information staff need to understand your condition and requirements.
FULL RESOURCE PACK: your detailed care plan, individual requirements and any different scenarios you've prepared for.
It meant everything wasn't dependent on me repeatedly explaining my medical history to every new person who walked into the room.
Have a plan, but also plan for the plan changing
For my birth, I wrote a really detailed birth plan that included different decision trees and scenarios rather than only describing my ideal birth.
That turned out to be incredibly relevant because things did NOT exactly go to Plan A!
I think the same principle can apply to other planned hospital admissions.
Think about what would happen if:
• You need an unexpected procedure
• Your admission lasts several days longer than planned
• You're moved to another ward
• You're unable to advocate for yourself
• You need a medication or product you hadn't expected
• Your planned treatment or procedure changes
• The person supporting you has to leave
• Something becomes an emergency
You obviously can't prepare for every possible scenario, and trying to do that would probably drive you mad.
But thinking through the most realistic alternatives beforehand can mean you're not trying to make every decision from scratch when you're exhausted, unwell or in pain.
Find out what products they might need to use
This was a BIG part of my preparation.
I tried to find out what products might potentially be used during my admission and, because of my allergy history, patch tested appropriate products in advance where possible.
I also thought beyond what I expected to happen.
My admission was for birth, but there was always the possibility of interventions, surgery or other unexpected situations, so I wanted to know about potential products BEFORE I was suddenly in a situation where they needed to be used.
Depending on your admission, things you may want to ask about include:
• Antiseptics
• Adhesives and tapes
• Dressings
• Gels and lubricants
• Cannula/IV products
• Monitoring equipment
• Surgical preparation products
• Wound care products
• Toiletries and personal-care products
• Anything else that's likely to have prolonged contact with your skin
Obviously, not every medical product can or should be patch tested yourself.
Something being tolerated on your skin also doesn't guarantee that you won't react to it in another context, so please discuss testing, medications and medical alternatives with your own team where appropriate.
But simply finding out WHAT might be used gave me the opportunity to identify potential problems and discuss alternatives before I was actually in the situation.
Bring your own products where appropriate
For some things, rather than trying to find something suitable once I was already in hospital, I brought products I had already used and knew I tolerated.
For example, I brought my own aloe gel for use around cannulas because this was something I had already used.
Depending on your own triggers, this could also apply to things like toiletries, wipes, moisturisers or other everyday products.
Obviously hospitals have infection-control requirements and there will be situations where they need to use specific medical products, so you can't assume you'll be able to substitute everything with something you've brought from home.
But if there are products you know you react to, it's definitely worth discussing alternatives beforehand and asking whether you can bring something you already tolerate.
Think about EVERYTHING that touches your skin
It wasn't just medications and obvious medical products I had to think about.
Hospital linens and anything that had been washed using products I react to were another potential trigger for me.
So I brought my own:
• Sheets
• Pillowcases
• Towels
• Pillows
• Plenty of spare linens
And I mean PLENTY of spares!
I also pre-washed things that I knew would have prolonged contact with my skin, including my compression socks and gown.
For my birth admission, we were also able to pre-wash the CTG straps used for monitoring.
This is obviously something you'd need to arrange with your own hospital because there may be specific hygiene and infection-control requirements, but it's a good example of the less obvious things you may want to think about.
I'd basically look at your planned admission and ask yourself:
What is going to be touching my skin for hours at a time?
There may be things you wouldn't automatically think of as an "MCAS product" at all.
And seriously, bring spares.
If something gets dirty, wet, contaminated with fragrance or simply needs changing, having ONE safe version isn't necessarily enough.
Ask about equipment too
Another thing that's easy to overlook is equipment that's constantly moving between patients.
Where possible, some equipment was kept exclusively for me once it had been appropriately disinfected, including things like my blood pressure cuff and birthing ball.
If cleaning products or residues are a trigger for you, you could ask whether frequently used non-disposable equipment can remain with you rather than continually being moved between patients.
What is possible will obviously depend on the hospital, the equipment and infection-control requirements, but it's worth asking.
Ask about a private room
For me, fragrance wasn't only about the products being used directly on my body.
Other people's perfume, toiletries and fragranced products can also trigger me, which obviously becomes much harder to control on a shared ward.
Having my own room therefore made a HUGE difference.
A private room isn't going to make the environment completely fragrance-free because staff and equipment will still be coming in and out, but for me it removed a massive potential source of exposure from other patients and visitors.
If this is medically important for you, I'd raise it well before your admission rather than waiting until you arrive.
Of course, hospitals can't always guarantee that a private room will be available, but explaining WHY you need one gives them the opportunity to plan for it where possible.
Consider bringing an air purifier
I also brought my own air purifier into hospital.
For me, this was another layer of trying to make the environment as manageable as possible.
An air purifier obviously can't magically make a hospital room completely free from your triggers, but if you already use one and find it helpful, it's something you could ask about bringing.
I'd check with the hospital beforehand because they may have rules or electrical-safety requirements for equipment brought onto the ward.
Make a proper food plan
Food was another BIG consideration for me because I couldn't simply rely on hospital meals due to my allergies.
I needed my own food brought in for every meal.
If you're in a similar situation, don't just think about what you're going to eat on Day 1.
Find out:
• Whether someone can bring food in for you
• Whether you'll have access to a fridge
• Whether there's somewhere to heat your own food
• What safe snacks you can keep beside you
• What you'll drink
• Who can replenish everything if you're there longer than expected
This last one ended up being particularly important for me.
My hospital stay became MUCH longer than originally expected, so I needed a system that worked beyond the first bag of food I'd prepared.
Bring more medication than you think you'll need
For the same reason, I made sure I had plenty of my normal medication with me, including my rescue medications.
I wouldn't pack exactly enough medication for the number of days you're expecting to stay.
My own admission is a pretty good example of why!
If you're allowed to, bring enough to account for the possibility of a longer stay and make sure staff know exactly what you've brought and what you normally take.
It's also really useful to have a written medication list including:
• Medication name
• Dose
• Frequency
• Why you take it
• Any relevant medication allergies or previous reactions
• Your usual rescue plan, if you have one
Hospitals have their own policies around medication brought from home and self-administration, so check how yours handles this.
If you're having a baby
Obviously this section won't apply to everyone reading this, but this was another BIG part of my preparation.
I wanted to think about what would be touching my baby too because those products would inevitably also be constantly touching me.
I therefore brought my own pre-washed:
• Baby clothes
• Hats
• Towels
• Muslins
• Cot sheets
• Other baby linens
• Fragrance-free baby wipes
• Scent-free nappies
If you're preparing for birth with MCAS, I'd basically think about your baby's belongings in the same way you think about your own.
Wash everything beforehand using whatever laundry routine you already know you tolerate and ask your maternity unit what you're allowed to provide yourself.
Make sure the person with you REALLY knows the plan
If you're going to have a partner, family member, friend or carer with you, make sure they understand your requirements rather than only knowing that you "have MCAS".
They may end up being the person advocating for you at exactly the point when you're least able to do it yourself.
Ideally, they should know:
• Your most important triggers
• Your serious allergies
• Where your medications are
• Where your rescue medications are
• Which products you tolerate
• Which products you definitely DON'T tolerate
• What adjustments have already been agreed with the hospital
• Where your medical information/resource pack is
• Who to speak to if there's a problem
For something like birth, surgery or any admission where you may be heavily medicated, exhausted or very unwell, I think this becomes even more important.
I knew my own medical history inside out, but I didn't want the entire system to depend on ME being able to explain it at all times.
MASTER MCAS HOSPITAL PREP CHECKLIST
This is the part you can copy and paste straight into your Notes app and alter to suit your own triggers, conditions and admission.
You absolutely DON'T need everything here.
Delete anything that isn't relevant to you and add anything specific to your own MCAS, allergies or other conditions.
BEFORE YOUR ADMISSION
☐ Contact the relevant hospital team as early as possible
☐ Explain your MCAS, allergies and other relevant conditions
☐ Discuss fragrance and chemical sensitivities
☐ Make sure your allergies and triggers are clearly documented
☐ Provide your hospital with your own detailed care plan/birth plan if relevant
☐ Ask whether the hospital can prepare a short MCAS guide for staff
☐ Ask for important requirements to be included in staff handovers
☐ Consider a physical or laminated information pack that can remain with you
☐ Ask about an allergy/fragrance alert on your room door
☐ Ask about a private room if medically needed
☐ Ask whether you can bring an air purifier
☐ Find out which products may potentially be used during your admission
☐ Discuss alternatives for products you know you react to
☐ Appropriately test potential products beforehand where medically appropriate/advised
☐ Ask whether you can bring products you already know you tolerate
☐ Ask whether you can bring your own linens and towels
☐ Ask whether washable equipment/items can be prepared beforehand
☐ Ask whether frequently used equipment can remain exclusively with you
☐ Make a plan for food
☐ Make a plan for an unexpectedly longer admission
☐ Make sure your partner/advocate understands your requirements
INFORMATION TO BRING
☐ Short medical summary
☐ Full allergy and trigger list
☐ Medication list with doses
☐ Rescue/emergency plan if you have one
☐ Relevant consultant letters/information
☐ Admission plan or birth plan
☐ Alternative scenarios/decision tree if relevant
☐ Copies accessible to your partner/advocate
MEDICATIONS
☐ Regular medications
☐ Rescue medications
☐ More medication than required for the expected stay, where appropriate
☐ Medication in its original/appropriate packaging
☐ Any supplies you need to take your medication
☐ Written list of medication names, doses and frequency
PRODUCTS
☐ Your tolerated toiletries
☐ Soap/body wash
☐ Moisturiser
☐ Wipes
☐ Menstrual/postpartum products if needed
☐ Your own tolerated gel if agreed
☐ Any other products you already know you tolerate
LINENS + CLOTHING
☐ Own sheets
☐ Pillowcases
☐ Towels
☐ Own pillows
☐ Blankets if needed
☐ LOTS of spare linens
☐ Pre-washed clothes
☐ Pyjamas/gown
☐ Pre-washed compression garments if used
☐ Any washable medical items the hospital has agreed can be prepared beforehand
ENVIRONMENT + EQUIPMENT
☐ Fragrance/allergy sign for your door if needed
☐ Air purifier if permitted
☐ Ask about an exclusive blood pressure cuff if appropriate
☐ Ask about other frequently used equipment remaining with you
☐ Chargers/cables for equipment you're bringing
☐ Check the hospital's rules for electrical equipment brought from home
FOOD
☐ Safe meals
☐ Safe snacks
☐ Suitable drinks/electrolytes if appropriate for you
☐ Containers/cutlery if needed
☐ Check whether you'll have fridge access
☐ Check whether you'll have food-heating facilities
☐ Arrange somebody who can replenish your food if your stay is extended
IF YOU'RE HAVING A BABY
☐ Pre-washed baby clothes
☐ Hats
☐ Muslins
☐ Towels
☐ Cot sheets
☐ Blankets/other linens
☐ Fragrance-free wipes
☐ Scent-free nappies
☐ Ask about pre-washing CTG straps
☐ Ask what products may be used during labour and birth
☐ Ask what products might be needed if your birth plan changes
If that list feels completely overwhelming...
I know this is a LONG list.
And the last thing I want is for someone with chronic illness to come to this page looking for help and leave thinking I've just given them another 50 jobs to do!
You absolutely don't need to do everything I did.
My MCAS and allergy situation required a lot of preparation, and your triggers may be completely different from mine.
If I were stripping everything down to the things I think made the biggest difference, I'd focus on:
• Speaking to the hospital BEFORE you're admitted
• Making your most important allergies and triggers incredibly obvious
• Finding out about potential products in advance
• Bringing the things you already know you tolerate
• Having somebody else who understands your requirements and can advocate for you
• Preparing for the possibility that you'll be there much longer than expected
That last one is something I appreciate even more after actually going through it.
I went into hospital to have my baby and ended up spending two weeks there.
Suddenly having enough safe food, clean fragrance-free linens, medication and other supplies wasn't just me being ridiculously over-prepared. These were things I needed every single day.
Hopefully you won't need half of the contingency plans you make.
But if your admission DOES become longer or more complicated than expected, you've already done some of the thinking while you're at home rather than trying to solve everything from a hospital bed.
And that was really the purpose of all my preparation.
One final reminder...
This resource is based on my own personal experience of navigating a hospital admission with MCAS, allergies and multiple chronic illnesses.
MCAS is incredibly individual, so something that works perfectly for me could be completely unsuitable for somebody else.
Please use this as a starting point for your own preparation rather than a universal MCAS protocol. Discuss your individual allergies, previous reactions, medications and any changes to medical products or procedures with your own medical team.
Hospital infection-control and safety requirements also have to come first, so there may be things on this list that your hospital can't accommodate or needs to approach differently.
But most importantly, don't be afraid to start these conversations early.
The more that can be discussed, documented and agreed before you arrive, the less you're trying to explain when you're already exhausted, unwell or overwhelmed.
I hope putting everything I did in one place gives you a useful head start with your own preparation.
Katya
@positivelychronic_🤍
