My condition, my decision… or so it should be

I think on this blog I tend to brush over just how much my joints affect me. I am not one to make a big deal out of things, and I don’t tend to complain that much… unless I am really struggling. However, even when my joints are relatively quiet they still cause problems in my daily life. I am constantly worried about doing too much, for fear of causing a flare. I now automatically analyse every task that I have to do in a day and prioritise what I needs done, and what I can do if I have the energy.

It’s been 10 months exactly since months exactly since my diagnosis, and I have just experienced something which is probably the most heartbreaking encounter since my diagnosis. One thing that I am not, is a quitter. I try not to let my joints get in the way of things. I push through, sometimes a little too far, but I do everything I set out to do. So when my lecturer tells me that I can’t take part in a module of my course because of my joints, I literally felt like crying. As part of the physiotherapy course you learn about manual therapies and manipulations which are aimed mainly at mechanical problems… AKA injuries and Osteoarthritis etc. so they aren’t supposed to be used in inflammatory joint conditions. Since I have notified the Uni about my condition, the lecturer for this particular module informed me that I will not be allowed to be used as a model in this module, although I can practice on other people. This means I am a barrier to my fellow peers. I am a problem. And I really don’t want to be a problem. Even though me being a barrier is protecting my joints, I still feel like I should be contributing in some way to the class, but the fact people can’t touch me during this module means that it is going to be incredibly hard to give people advice on whether they are doing things right or wrong, and it is harder for me to be able to perform things correctly since I don’t know what it should feel like.

I asked the lecturer if it would be possible to participate in sessions on joints that aren’t affected but he is scared that it could cause joint involvement in other joints, so I can’t. Even though I am absolutely devastated that I can’t join in… when it comes to my knees, I am really glad that I can’t participate. Even the thought of someone touching my knees makes me cringe. My ligaments have been sore continuously for 2.5 years now and I still can’t bare it when someone touches the ligaments. It’s just so painful… But having said that, I want to be able to participate in the other joints. I want to be able to show my enthusiasm for my course, I want to show that my joints don’t hold me back, I don’t want people asking questions about why I can or cannot participate. Even though this is for my own safety, it makes me feel like an outsider.

My illness is invisible, and even those who know about it don’t know the extent to which it affects me, both mentally and physically. Things like this really make me question how confident I am in my abilities. The choice I usually have on whether I can participate has been taken away, and I really don’t like it. To my knowledge, my lecturers have never dealt with a chronic, inflammatory joint condition so it must be hard to fully understand how much of an impact not having a decision causes. There have been times that my joints have dictated what I can or can’t do, and now I have people telling me what I can or can’t do because of my joints. It feels like I have less freedom than I had. And it makes me hate my joints. I had grown to accept my condition, and now I feel like I am at a point where I cannot accept it any more, and I am tired of it.

I am scared of the future now too. My joints have only caused me to be scared of the future once before, during a flare, but now I feel quite ill when I think about it. I don’t know what is going to happen, I don’t want my joints to dictate what I do, and I don’t want people to dictate what I do based on my joints. The only real control I have over this condition is deciding what I can and can’t do so the fact that it can be taken away is scary.

I have 2 mottos in life… the first is to appreciate everything and enjoy everything you get, because you don’t know when it is going to be taken away… and once it’s gone, it might not come back. Right now, I am really appreciating the control I had… and I’m not sure whether I am going to get as much of it back as I want. And my second one is to experience as much as I can in life… I guess this would be classed as one of the more negative experiences but I am going to try and grow from it. I need to learn to let go of the negative things and focus on the positive things, and this is one negative thing that I am letting go of by writing this post.

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