Patience

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.

Advertisements

6 thoughts on “Patience

  1. I was always good at patience until the RA raised its head. Always a self-sufficient person, having to wait while others do things I would normally do is very frustrating. It is becoming easier. I’m wondering if it will become such a part of me to have help that I will start to demand it. Oh dear. That is so not me. Patience will become my mantra.

    I was lucky. My diagnosis took a couple of weeks and was definitive. I hope you get yours sooner rather than later.

    1. I think, on the whole, I have become more patient since my joints have become messed up. Which is great because I can tolerate things I wouldn’t have managed to before hand. But patience is only one of few benefits bad joints has brought. Generally bad joints is not good and I would have preferred to become patient through other means.

  2. “you have to convince yourself that a doctor will listen to you, and not think you are crazy.”

    That’s the most truthful thing I’ve ever read, not only about being diagnosed and finding the toght doctor, but about having a chronic illness. Some days I am convinced I’m going mad, thinking ‘is this all in my head?’ I know it’s not.

    Anyway, a diagnosis would be nice but you’re right in saying it is just a name. So long as you’re on the right track with the right treatments, little else matters. Even then, I hope you do get a diagnosis: It’s really nice to know.

    1. How long did it take you to get a diagnosis Elizabeth?
      Some days I am sitting on the sofa, convinced that I’ve gone crazy, but I can look at my joints and I realise that I’m not completely bonkers just yet.

      1. If you count my diagnosis since seeing a rhuematologist, it took about two years. My first doctor was confused since I didn’t have a clear case of JRA. My second picked up on a few of those ‘off’ things so he could diagnose me with psoriatic arthritis. But honestly, I’ve had symptoms of arthritis since I just beginning to walk. I even had a flare that landed me in hospital at age eight but no doctor would admit I was sick.

        I do the same! It’s what keeps me from going insane.

      2. I’m the same, except I have a clear cut case of nothing yet 🙂 it was good that a Rheumy diagnosed you even though it was a 2 year wait… I guess that’s all it is… A waiting game

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s