Patience is defined as “the capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious” (oxforddictionaries.com) and that’s just what you have to be when you have a chronic illness, patient.
The second time I walked into my rheumatologists office she welcomed me saying “so your the mystery girl” meaning your the kid that has the joint pain and symptoms of arthritis, the one we believe but have no proof of the disease. That basically sums up my joint status, or would have summed it up the last time I saw my Rheumy. Since then my pain has increased considerably, there are times that I can’t focus on what people say and others that I am so irritable that I push people away. I also have random swelling of joints, a knee here, a finger there, a thumb, a hand, a wrist, an ankle, the list goes on. I also show pretty definitive signs of inflammation (in addition to the swelling) a joint that radiates heat, a joint that is pink/red for no reason, other than this “mystery” condition that no one can give a name to.
Yes, as soon as I walked into that rheumatology office for the second time in my life, I knew I was going to be in for a bit of a wait.
It’s been about 6 or 7 years since my joint pain started, since then I have seen 7 different physiotherapists, a GP and a rheumatologist. I have had numerous MRIs, x-rays, nuclear bone scans, countless vials of blood taken and still the best answer anyone can give me is “you have signs of arthritis” or “I really hope you don’t have JIA (juvenile idiopathic arthritis), it is devastating for the family”
I said in my last post that I am cool with where I am in this journey to a diagnosis, and I am. Many people say that getting the diagnosis is the hardest part, and in many ways it is, you have to convince yourself that a doctor will listen to you, and not think you are crazy. You have to put up with your own doubts in your mind that you aren’t making all this up, your parents doubts about this condition, your extended families doubts. As well as having to put up with the constant battle your joints give you… It is tough, but they wouldn’t call it a battle if it was easy!
I try not to think about getting the actual diagnosis now, unlike how I was to start with, because putting a name to this is not my first priority anymore, treatment is. Effective treatment, that I may or may not hate but something that will help me feel even the slightest bit better.
But I do think that if, or when, I get a diagnosis, it will be slightly underwhelming, all a diagnosis would be is a name. I have already dealt with this condition for a long time, I don’t think a diagnosis will change that. But treatment might.
I have spoken to so many people who have serious chronic conditions some requiring quite potent medications over long periods of time to help manage the condition, and so you see the diagnosis is only a small part of the journey. Think of a diagnosis as a milestone rather than the finish line because chronic illness doesn’t stop because you have a name.