cross-posted from http://obsidianribbons.wordpress.com
in RA, nobody tells you anything. yet, everyone judges you for it.
when i was finally diagnosed with RA in 17, having it progressed from JIA, i wasn’t told how life would be. it is a relief, to know for once, know what’s wrong with me. all the joint pains growing up, being a different kid because i couldn’t walk because my knee just couldn’t straighten, or because i couldn’t touch my shoulders in music class because my elbow was inflamed. and doctors that are baffled as to what could be wrong with me.
they don’t tell you that RA is a life sentence, that the rest of your days will involve pain, pills, blood tests, complications, and money. they don’t talk about remission. to me it felt almost like a taboo, talking about remission. they don’t tell you where it’ll hurt. i think they assume you know it’ll be the joints. but they don’t tell you the unlikely. the bursae, the tendons, the entheses, the fascias. of course there are the others. the fatigue, malaise, the morning stiffness. the likelihood of extra-articular manifestations in the lungs and other organs. they don’t tell you that while prednisolone makes you feel SO much better, there is the weight gain, moon face, and other metabolic issues to contend with. they don’t tell you that DMARDs, while they can halt disease activity, can hurt your liver, kidneys and eyes. they don’t tell you that the drugs that can really make you feel better (the biologic agents) cost thousands of dollars. they don’t tell you that you’ll have days when you can’t put on or take off a shirt. days when you can’t open a bottle. days when you can’t walk without crying. days when nights are sleepless because of the pain.
they don’t teach you how to grief about the loss of certain things in life- the normalcy of daily living, the ability to do what you love. they don’t teach you how to talk to others about it, which can turn out really bad. because it is the lack of understanding from others that you keep to yourself. you don’t tell others anymore about your pain. because they dismiss it, they brush you off, they tell you insensitive things like you being “weak”, or tell you things like you having to “suck it up”. they don’t tell you that you might fall into depression because of the impact RA has on you. and they don’t tell you that it’s ok to be depressed about it.
RA is an invisible disease. and we accidentally make it more invisible by not talking about it. i can say very honestly that i am one too. i’ve had RA for almost my whole life, and even till today, i haven’t learnt to properly cope with it or talk about it. what they don’t tell us, i guess then, is our onus to find out. it is being an empowered patient. it is about taking control of RA, and not letting it take control over you. living with RA is a continuous learning process. it might seem nightmarish at first. but with time you get to learn so much about yourself, so much of the things you are capable of doing that you never knew you could. do you know that? 🙂
well, it’s RA day today. no matter what we’ve gone through, it’s our day today! give yourself a good break, and a good hard pat on the back. i’ll give all of you warm and fuzzy hugs if i could too!