Wednesday, 13 August 2014

The RA Lie

I've been told a lie under any circumstance is wrong, but there are times the truth is not understood. I don't encourage lying, but I understand it. That is because I lie about my diagnosis.

Rheumatoid arthritis isn't too common, but most people have at least heard it's name in passing. But compared to psoriatic arthritis, it's practically a celebrity. RA is just more commonly diagnosed, so it's more likely to hear about. In fact, many people with psoriatic arthritis will not be diagnosed or will be misdiagnosed with RA due to rheumatologists overlooking psoriasis or because you just don't have psoriasis (my case). I was said to have JIA when I was younger, until another rheumatologist distinguished it as juvenile onset psoriatic arthritis due to my family history, nail changes, and many other distinguishing symptoms. But even then, I've been told many times I could pass as having RA.

If you tell someone you have psoriatic arthritis, they look at you funny and ask what language you're speaking (Latin, actually). Sometimes they'll hear the arthritis and say "Oh, so it's like for old people?" But if you tell someone you have rheumatoid arthritis, they mostly either get it or tell you that their grandfather has that (bonus points if they tell you that you're too young for that). So, when I need to get my point across quickly (like to a security guard who asks why I have prescription pills with me, for example) I just say I have RA. I don't like to do it, but when I'm in a hurry it is a life saver. But any other time I tend to explain that it is psoriatic arthritis- I like spreading awareness.

But even when I've explained to people that my disease is like RA, but with a few differences, I still have a difficult time. They assume it's not as severe as RA ever will be, or that it's not serious. In fact, I've been told I'm very lucky it's not rheumatoid arthritis. But this is not as true- I have been told by rheumatologists that my PsA is very similar to RA in it's pattern and course. It's just I don't have the RA positive lab work, usual swelling (usual swelling, I do have swelling though) or redness. I have had nail problems, organ problems and many other fun things though. Call that unserious.

Sometimes it's easier to lie. I didn't say it's the right thing to do though, I wish I could do the right thing and be honest, but people give me such a hard time. I wish I could say "I have psoriatic arthritis" and for once have someone know what it is. I know many people won't agree with this. To be honest, I feel very guilty. But I'm also very tired of arguing that I have a valid diagnosis. I hope you understand.

2 comments:

  1. I absolutely understand, Elizabeth.

    Sometimes it's just too much effort to explain it all. I have RA, and it's hard enough to make people understand that it's not osteoarthritis, which is very common and most of the time, actually does occur in middle-aged and older folks. I was older than you when I was diagnosed--31--but boy, did I rack up the bonus points for "you're too young for that!" As if I might be wrong about why I'm not shaking hands or loping along on crutches. Sigh.

    No one in the RA community will be bothered with your little white lie--don't worry. But you're right, too--when there's time, and the person you're speaking to is truly interested, educate them about psoriatic arthritis. Because it's real and it can be just as devastating as RA.

    I'm glad to hear you don't have skin psoriasis, though. That seems (to me, at least) just a little bit much for a young, lovely person to bear, particularly as she copes with all the other symptoms of the disease.

    Take care, smile, and be proud of the smart, resourceful, beautiful person you are. I'm out here cheering you on. :oD

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    1. Thanks so much for your reassurance Wren, your comments always make me feel much better. I'm glad there are people in the world like you :)

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