Doctor Appointments with a Chronic Illness: What I’ve Learnt After 20 Years
For the past 20 years, I’ve been navigating life with a disability after a quad bike accident left me partially paralysed from the waist down.
That’s two decades of doctor appointments, hospital visits, consultations, referrals and waiting rooms. And here’s what no one tells you...being a patient, especially with a long-term condition, is a skill. It’s something you learn over time and all too often, the hard way.
So if you’re living with a disability, chronic illness, or navigating the NHS regularly - here’s what I’ve learnt about doctor appointments that can genuinely make a difference.
1. Stop Downplaying Your Symptoms
Many of us instinctively minimise what we’re going through.
We say things like:
- “It’s not that bad”
- “I’m managing”
- “It’s just a bit uncomfortable”
But this can lead to your symptoms being misunderstood or underestimated. If you want the right support, you need to be clear and honest about what’s actually happening in your body.
2. Always Write Things Down Before Your Appointment
Doctor appointments can feel rushed. Add in nerves, brain fog, or pain and it’s very easy to forget important details.
Before every appointment, write down:
- Your symptoms (and how they’ve changed)
- Questions you want to ask
- Any concerns or patterns you’ve noticed
This one habit can completely change how productive your appointment is.
3. You Don’t Need to Be a “Good Patient”
There’s often an unspoken pressure to be easy, agreeable and not take up too much time.
But being a “good patient” shouldn’t mean staying quiet.
Your role isn’t to be convenient.
Your role is to be accurate.
4. If Something Doesn’t Feel Right, Say So
You know your body better than anyone.
If something feels off:
- Ask for clarification
- Question the decision
- Request further explanation
A rushed answer isn’t always a complete answer.
5. Ask Better Questions (Even If They Feel Awkward)
The quality of your questions often shapes the quality of care you receive.
Try asking:
- “What are my options?”
- “What happens if I don’t do this?”
- “Are there alternatives?”
And one of the most powerful questions I’ve ever used:
“If I was your daughter, what would you do?”
It shifts the conversation.
You often get a more honest, human answer and not just a clinical one.
6. You Are Allowed More Time
If you feel rushed, it’s okay to say:
“I don’t feel like I fully understand yet.”
You can:
- Ask for more time
- Request another appointment
- Ask for things to be explained differently
This is your health, your long-term quality of life.
7. Take Someone With You If You Can
Medical appointments can be overwhelming.
Having someone with you means:
- Another set of ears
- Someone to remember details
- Support if the conversation becomes difficult
It’s not about capability, it’s about support.
8. If You Feel Dismissed, Trust That Feeling
Many people with chronic illness or disability leave appointments feeling unheard.
If that’s happened to you, it’s not in your head.
You are allowed to:
- Seek a second opinion
- Ask to see another doctor
- Advocate for a different approach
Feeling listened to isn’t a luxury, it’s a basic part of good care.
Living with a Disability Means Learning to Advocate for Yourself
The reality is, navigating healthcare, especially within the NHS, can be complex.
And while doctors bring clinical expertise, you bring lived experience.
The best outcomes often come when those two things meet.
If you take one thing from this blog, let it be this:
You deserve to be heard.
Not rushed. Not dismissed. Not overlooked.
Whether you’re living with a long-term condition, chronic illness, or disability your time matters in every appointment. It's so normal to not always feel this, but it does mean you will need to act in order to get what's best for you, your health, your happiness.
FAQs About Doctor Appointments and Chronic Illness
How do I prepare for a doctor appointment with a chronic illness?
Preparation can make a huge difference to how effective your appointment is. Before you go, write down your symptoms, how they’ve changed, and any questions or concerns you have. Bring a list of medications and note anything that’s impacting your daily life. If possible, take someone with you for support and to help remember key information. This helps ensure you don’t forget important details, especially if you’re dealing with pain, fatigue, or brain fog.
What should I say if I feel dismissed by my doctor?
If you feel dismissed, it’s important to speak up calmly and clearly. You could say:
- “I don’t feel like my concerns have been fully addressed.”
- “Can we explore this a bit further?”
- “I’m still worried about these symptoms.”
If needed, ask for clarification, request further tests, or seek a second opinion. Trust your instincts, feeling unheard is a valid reason to push for more support.
Can I ask for a second opinion on the NHS?
Yes, you are entitled to ask for a second opinion on the NHS. You can speak to your GP or consultant and explain that you’d feel more comfortable getting another perspective. While it’s not an automatic right in every situation, most healthcare professionals will support this if there’s a clear reason. It’s a normal part of healthcare and can help you feel more confident in your treatment plan.
How do I advocate for myself in healthcare?
Advocating for yourself means being clear, prepared, and confident in communicating your needs. This includes describing your symptoms honestly, asking questions, and speaking up if something doesn’t feel right. You are allowed to ask for more time, request explanations in plain language, and be involved in decisions about your care. One powerful question to ask is:
“If I was your daughter, what would you do?”
It can often lead to a more honest and human response.
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