Sometimes it is hard enough for us to understand our own suffering in the fight for rheumatoid arthritis, but for us to explain it to our family it almost an impossible task. Lately, I have been replaying my past journey with rheumatoid arthritis. It brings up emotions I thought were long gone, and memories I have chosen to forget. The one thing I remember most was trying to help my family understand, when I myself was so confused and lost. So I have come up with a letter to my family, one I wish I would have had from the beginning, to explain what I went through and to bring some understanding.
You may have just heard the news of me being diagnosed with rheumatoid arthritis, and while I know you feel the need to comfort me, please give me some space. Right now I just need time to process what I have just been told. Right now I can’t even get my own thoughts straight, let alone explain this disease to you. I just need some time.
You may see the look of pure terror on my face or see it in my eyes. Right now I AM terrified. If you feel the need to comfort me please don’t say things like “it’s going to be alright,” because, to me, it isn’t. I have just been told that I will live the rest of my life with a painful, crippling, incurable disease. That’s not alright. I have just been told that the plans I have made for my future may never happen. I’m not alright.
I have just been told that my family is destined to see me, at times, unable to walk or feed myself. You’re not alright. Everything is NOT alright. Please do not tell me right now that I have to fight this disease. While it may be the best thing you can say, I cannot, at this time, begin to wrap my head around how to fight this awful, incurable disease. Right now I do not feel strong enough to fight. I feel beat down and kicked around by this disease. Right now I feel so weak, so please just give me time to build up my strength.
Please understand my depression. I know this will be difficult for you, but you must understand that in just a few words spoken by my doctor my life has changed forever. There may be many days that I just want to lay in bed and cry. Please don’t worry about me, I am just mourning that life I had expected to live. And I’m so tired, as this has all been too much for me as well. Besides, the tears make me stronger and more able to fight.
I want you to know that I am not mad or angry at you in any way, and apologize in advance if I have harsh words. Right now I resent being sick and I may even resent that fact that you are healthy. Please don’t take this personally, as I am learning how to deal with these new feelings. You may think that I am a bit too bitter, but please understand that watching people get up and about while worrying if I will even be able to make it out of bed in the morning, or take a shower, or brush my teeth by myself does make a person a tad bit bitter.