A Letter to the Family of a Rheumatoid Arthritis Sufferer
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.
There may be days when you ask how I am feeling. If I say I’m fine and you know that I’m not, please don’t push me to really tell you how I feel. I fear that if I tell you that I feel like I have been hit by a semi that has backed up and hit me again, and that I would do almost anything to make the severe pain go away it would be too much for you to bear. I say that I am "fine" for your benefit.
While I know that you don’t mind helping me and taking care of me, this is one of the most difficult things for me. I want to be the one to be able to take care of you and do things to help you. It is hard for me now that the tables have been turned. While in the past I may have, at times, been frustrated by the tasks I had to take care of, I now yearn for the ability to do those very same things.
The one thing I ask of you the most is to smile. I can hardly stand the look on your face when you see me unable to get up by myself. The look of pure fear on your face when I have to ask you to hold a glass of water for me so I can take my pills is unbearable. It’s not that I don’t genuinely appreciate your help, but it makes me feel sick, and it kills me to know how much you worry for me. It kills me to see that look in your eyes. Just smile for me.
Please know that I cannot fight this disease without you, even though there may be days that I yell at you for trying to help me. Yes, I will need help. I may even need a lot of help. But right now, I have to figure this out on my own. There are things I have to learn to do by myself. I know you just want to help, but I promise to ask for help when I desperately need it. I have lost a great deal of my independence and have to learn how to regain some of it.
Please know that someday I will be ready. I will be able to graciously ask you for help and genuinely thank you. I will be strong enough to take my pills, keep my doctors appointment, and even keep plans with friends and family. I will fight, and I will be alright. I will not be lost forever. I will be back. After all, the one thing rheumatoid arthritis cant take from me is who I am. I love you so very much, and I know that you love me as well. I am confident that together we will make it through this, perhaps in baby steps " literally
I Believe in Miracles!
Writing this letter to my family made me cry, in fact it made me bawl. While I am a strong rheumatoid arthritis fighter now, I still have some of those exact same feelings. I AM okay when I have difficulties walking across the room. But, the look I still see on my families faces when they watch me is still almost too much to bear. And as bad as it sounds, I still feel resentful sometimes. Can you imagine " feeling resentful towards the people I love and care about. Sometimes I have to remind myself of all that they have had to go through with me on this journey. I have to remember how many thousands of prayers have been sent out for me, and how many people have cried along with me on my behalf. And when my nine-year-old son says he believes in miracles, and that if anyone deserved one it would be me, it makes me realize that this has been an awful, amazing, depressing and wonderful journey.
A Wonderful Life
And when my six-year-old hugs me and gives me a kiss, because he honestly thinks that it will take away all my pain, I am reminded how I could never had made this journey without my family. I have never been alone on this journey, my family has been there with me the whole time fighting for my life. They have been here fighting for this wonderful life, despite rheumatoid arthritis, that I live everyday. Good luck and best wishes!
Holly wrote for HealthCentral as a patient expert for Rheumatoid Arthritis.