My not so invisible illness

You know when you are in one of those situations where you actually have no words? You are speechless? I was in one of those situations today.

Mum’s friend is a beautician and she comes to wax my legs every month and a half (yes it is painful but I can’t be walking around all furry now). Anyway today I rolled up my trousers and sat down and we were just chatting away when all of a sudden she goes, your knees are swollen. This being the norm for me now, I wasn’t really phased by that comment so I just said they look better than usual today, which is the truth. But what really shocked me what when Mum’s friend turned around and asked me right out “do you have Rheumatoid Arthritis?” What are you supposed to say to that? “Erm yes, no, possibly? My doctors and I suspect arthritis but we actually have no idea and probably never will.” Is that how you answer it? Nope I just gawked. Haha, she probably thought I was acting totally strange, but when you ask someone that, what do you expect?

When she said Rheumatoid Arthritis, I was pretty surprised that she actually knew what it was at all! I mean, a lot of people who don’t have it themselves, or within their families/close friends don’t really know what it is. And I think the fact that she figured my swollen knees equalled RA was surprising in itself! I mean, my Rheumy has never seen my joints swollen and my physios have only seen my ankle swollen, and since I am really rubbish at working out if a joint is swollen or not, it really amazes me to find that someone who doesn’t know anything about my medical conditions can identify, correctly might I add, that I have swollen joints and possibly some form of arthritis is scary.

I have mixed feelings about it really. Yes, it is good that someone can tell that I am sore, that I am swollen, that I am stiff and that I am having issues with my joints but do I really want someone to know that? Not really. I am open about my health on this blog and on twitter and on this blog’s Facebook page but I don’t tend to tell many friends how I am feeling unless they ask. I also don’t like the fact that this swelling is bad enough that someone who isn’t looking for swelling can see it, I don’t find that encouraging at all. But hopefully when I show my physio some pictures of my joints on the 16th, she will be able to give me a little more insight into what is going on, and maybe even forward my pictures on to my Rheumy for me.

What this does mean though, is that my invisible illness is not as invisible as I thought.

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4 thoughts on “My not so invisible illness

  1. That’s amazing that someone knew about RA! I read that you have an autoimmune condition, but how come they haven’t narrowed it down yet? Are you being treated for your joint pain? Hope your joints calm down!

    1. My Rheumy refers to me as the mystery girl. Basically I am RF+ and I have joint pain and stiffness but I didn’t swell at all until a flare at Easter. And since then I haven’t seen my Rheumy or physio to show them. Also, although my Rheumy believes me about the pain and prescribed Indometacin, an NSAID, my scans keep coming back clear and my nuclear bone scan was inconclusive because it suggested I was still growing. So basically although my Rheumy believes that I am having issues, she can’t treat because I don’t fit any guidelines really.

  2. Aww, mystery girl! Yes, I guess sometimes the diagnosis isn’t so clear. But if you’re having unbearable pain, it might be worth it to step up the treatments eventually. Hope it doesn’t get too out of hand though.

    1. To be honest, I think my Rheumy would probably change my NSAIDs but the last time I saw her was a year ago so that is another factor in my lack of diagnosis, I keep falling off people’s patient lists.

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