- If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
Oh how I wish I had a time machine. I would have been able to tell myself that even if it doesn’t get better (something I will always hope for anyway) that it gets easier. It’s easier to manage, to cope, to understand, to talk about and to know that it’s ok to need or ask for help. Hell once you put your pride away, or dodge around it, it’s one of the best things you can do. I think for yourself and others (I have found that people in general just want to help, they just don’t always know how to). Also that you can still have a life with it, if you want to. If you go out there and decide to live it. It might be a different life, but life it is.
I think that I would educate, and inform myself a lot more about this disease. When I was diagnosed I was so naive. No one told me that I would have this for ever, my rheumatologist (who is a great rheumatologist) even wanted to wait on formally diagnosing me, and telling my medical aid insurance, because some kids can out grow this in their first year, and she has had a couple of kids who did. So I was under the impression that I was going. I think not actually having time to see my rheumatologist before I went back to school, and so only getting news through my mum (a doctor too) on this, added to this misunderstanding. So although my mum sent me information on it, to help me understand, and I did, I don’t think much of it was absorbed, truly absorbed. I didn’t take it seriously at all. And even though I told the school therapist that I was aware that it might go away, and I was at peace with that. The truth was that I only said this, because I was certain that in a few weeks, maybe months I would be me again. So if I could go back to that day, the day I was diagnosed, I would make sure that I really understood what this diagnosis meant. It would have made this new reality so much easier if I had understood this from the beginning. So I wouldn’t have spent all those days wondering if it was just me. If I was just weird, because I wasn’t really responding to the NSAIDs I was on.
Finally I would have imparted to myself one of the most important things that I know now. That doctors aren’t gods, that there are many things in medicine that there are no cures for (not just Alzheimer’s and Cancer), and that doctors don’t know everything. They don’t have all the answers, and I can’t expect them too. No matter how much I wish they did.