Things I Wish They Told Me

I was about eleven when I began being treated for juvenile arthritis. As clever as I was at eleven, I didn't understand everything. Sometimes I wish doctors would sit there and tell you more, or at least give you a little pamphlet called "All the Things I Don't Explain." Even if I was beginning treatment and diagnosis now, I wouldn't have known these things. And I admit I'm still learning.

1. We're Not Treating Symptoms. We're Treating a Disease.

Treating the symptoms doesn't treat the disease, but treating the disease does treat symptoms. It may not mean your symptoms are relieved for a long time, but it could mean that damage is prevented. For example, if your doctor says it could take six months for a medicine to take full effect it means that you're body will be completely using the drug against the disease. It doesn't mean your symptoms will completely disappear by that point. I really wish they explained that.

2. This disease is progressive.

They didn't mention that. But it was probably for the better. Until it progressed.

3. You are going to grieve.

It's a very common thing to go through after diagnosis. The five stages of grief apply to dealing with diagnosis of a chronic illness. You may not go through all of them, and some people never get past some stages like anger or denial. But you have a good chance of finding yourself grieving. And that's perfectly fine.

4. Arthritis may affect you in ways you didn't expect it to.

Lots of people, even those who have it, don't realise how arthritis can affect more than just joints. I didn't know in the beginning that my fatigue was part of it, or that I would get kidney problems from the inflammation. Not that people newly diagnosed should expect to be affected in such ways, but it's good to know what to watch out for.

5. It's okay that it changed your life.

You might not like the way it changed things, but it's okay That it did change. A chronic illness is going to change things, even if you don't think it should or want it to. And don't let anyone convince you that you should let arthritis change your life, since it's "just arthritis." It's not just arthritis.


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