When I was first diagnosed with scleroderma at 15-years-old, after a year of being bounced around consultants, I was so shell-shocked that I didn’t ask a single question. My fear of taking up too much time in an overcrowded NHS prevented me from opening up. Doctors are trained to be impartial but this often creates disconnect between them and us and we are left feeling like we’re imposing if we ask too many questions.
I’ve managed to answer all these questions myself over the last ten years but I wish I’d asked them from the outset. It would have saved me a lot of worry and stress. Our doctors are there to help us and they can’t do that if we don’t open up. So, here are ten things I wish I’d asked my doctor when I was first diagnosed. I hope it helps you narrow down the questions you need answered by your physicians.
1. What is the prognosis?
My condition is rare and I was the first person to be diagnosed with it at my hometown hospital. So by the time I was given a name for the condition, I wasn’t sure what I was supposed to ask. All my consultants told me was what medication they were giving me and how often I would be seeing them. I wish I’d asked then what my prognosis was for the long-term. It would have saved me from doing a lot of scary research on my own.
2. How much do you actually know about the condition?
Doctors are trained to be generally knowledgeable about an array of conditions but they simply don’t know everything. I wish I’d asked this of every single one of my doctors from the age of 15. I would much rather hear a doctor say that they don’t know the answer instead of watching them blag or Google their way through an appointment. Our doctors are not infallible, helping them open up has drastically reduced the appointment stress!
3. What are my other options for medication?
We are taught to trust a doctor’s word and consume whatever medication they hand us, so we rarely ask what our other options are. I wish I had. I was given heavy doses of methotrexate and other steroids for well over a year, which wrought havoc on my body. While I know that treatments for autoimmune conditions can be tough, I wish I’d at least had the option to consider a wider range of treatment. Our doctors may have good intentions but we have the right to choose what to put in our bodies.
4. What natural/dietary changes could I make?
Medical professionals are trained to prioritise medication for chronically ill patients. They see a serious medical condition and start throwing all the necessary drugs at the problem. Pharmaceuticals may be important but I wish I’d asked about lifestyle changes to help me manage my conditions. Simple changes can make all the difference in the long-term and our doctors have a duty to inform us of our options.
5. What could have triggered this?
Autoimmune diseases are tricky and they don’t often have an obvious cause but I would have saved myself a lot of guilt if I’d just asked what the trigger might have been for mine. Doing my own independent research, I managed to heap all the blame on myself and spent years trying to untangle myself from it. They may not always be able to provide you with firm answers but they can help to assuage your fears.
6. Is this my life forever?
At 15, I thought that it would be too dramatic to ask whether the condition could impact my life forever. Instead I was left in limbo for years while I got vague answers from the internet about lifelong effects. Simply asking my doctor would have helped me grasp the concept of lifelong chronic illness. I am sure my doctor didn’t want to scare me but I think he did me a disservice not preparing me for the long-term impact my condition could have.
7. How could this impact other aspects of my health?
Autoimmune conditions are renown for messing up the entire body, strike one part down and another one will inevitably follow. I had no knowledge of that, I naively thought that scleroderma would just be a tiny bump in the road and that there would be no chance of other conditions developing. While you don’t want to overload a teenager with visions of a future full of illness, some insight could have prepared me for the bigger bumps in the road that came later.
8. Are there support groups I can join?
As a child with an illness, you don’t want to be defined by it. You want your life to be anything but being the ‘sick one’. So I focused on just getting on with it but I wish I’d taken the time to ask if there were any local or online communities/support groups I could join. If your peers are all able-bodied and healthy, there will always be things they don’t understand. Finding other people your age that are facing chronic health issues is invaluable in alleviating the isolation of being the ‘sick one’.
9. Where can I find out more?
Doctors aren’t encyclopaedias so there are always more resources to be found. However, diving into a sea of Google results without any expertise is just a bad idea. I spent years unsure of what kind of scleroderma I had and how it would affect me in the long-term because I got my information from bad sources. If I’d just asked for some reputable websites from my consultant he could have pointed me in a more helpful direction.
10. Is there a cure?
My diagnostics appointment was such a blur that I left the appointment unaware that my condition had no cure. I thought that all I had to do was take some medication and I’d be fine again within a matter of months. I couldn’t have been wrong. Clearly this was something my doctor should have outlined to me but I wish I’d just asked then. It would have made it a lot less shocking than finding out on Google.