What can a person expect with a diagnosis like rheumatoid arthritis?
Today I am sharing something more dark and difficult about this disease. I hope it informs people a little better about what this RA is and what it’s like to live with it. That said, I think it can be read from the perspective of almost any autoimmune disease that causes pain.
My Promise To You
I promise to greet you as you wake, and tuck you into bed each night.
I promise to always be new to you. You’ll never get used to me, and yet, you’ll always be tired of me.
I promise scores of medical bills. I promise referrals and labs and surgeries…I might not be your fault, but you’ll be charged as if I am.
I promise well-meaning advice—“omega three fatty acids,” “holistic healing,” “yoga” and “gluten free.” Sometimes you’ll hang on with hope to the revelation unfolding before you; sometimes you’ll defend yourself with confidence that’s lacking; sometimes you’ll be quiet–and wait for the subject to change. The statement “You don’t understand,” banging against clenched teeth.
I promise medication. They promise its efficacy. I promise side effects. They promise they’ll be worth it. I promise questioning your decision to take it. A panicked hesitation before each injection–a searing pain as it courses through your stomach or thigh.
I promise a tug-of-war battle with depression. Whether its from the meds or the pain or the reality that is now your life, I promise that it will nag and pick at your frail happiness. Some days it might win. You may spend a birthday in bed–nursing your sorrow and swollen joints. A bathtub filled with epsom salt and tears.
I promise you pain. Pain and pAiN and pain. Your lifelong companion, to have and to hold. Like a trained army that works as one, your body will gather its forces and attack. Pain like a sea with ebbs and flows. Pain that swells and bursts—crashing on bones and spitting salty tears on your face.
I promise misunderstanding. “But you don’t look sick,” “My grandma has arthritis,” and “At least it’s not cancer” washing you with bitterness and guilt.
I promise forever–a lifetime. Sometimes remission, sometimes reprieve–but I’ll be lurking and waiting in the shadows of your sunny days.
WOW. this is so… right. My story with RA is VERY similar to Rachel Rodriguez from the comment on 1/25/13… I turn 24 in May and was diagnosed in fall of 2010… came to your blog to read that adorable post about dates with older daughters (love the wine tasting suggestion, my mom and I took a trip to wine country two summers ago) and got caught up reading your posts about RA. I feel so lucky that I have not had to have surgery for my RA yet, and I’m amazed at your strength in remaining positive. I cried reading this post. Sometimes I forget that pain is not every 23 year old’s constant companion. The nurse practitioner at my Rhuematologist’s office constantly had to remind me that it isn’t normal. And laughed, a little, because it rings so SO true. The bit about “well-meaning advice” drives me up the wall. Everyone wants to give you the miracle cure that somebody they know said worked. It’s amazing how RA only effects 1% of the population and yet everyone “knows somebody” who “cured” their RA with yoga or a raw food diet or cutting out salt or going gluten-free (Ive given up my dream of being a professional baker due to the pain in my hands and knees… and my inability to lift 10 gallon metal mixing bowls… the next person who suggests I give up bread all together may get a very weak kick to the shins). Sorry this turned into a rant, I just identified so much with your post…
Oh my friend! I am so sorry. That season was the roughest in my life. I am actually right now in remission–quite recently. I have no idea for how long, but I am enjoying it right now. But I don’t go a day without thinking about RA and the pain I used to be in. Having it young is the worst. It makes me sad that you have to give up on your dream. I hope you find a better one–one that suits your body. Where does your RA affect you the most?
I am so very sorry. That is horrible. i remember a 12yo who was diagnosed with RA. Throughout my life I think of her — and with the occasional little trouble with aches and pains in my joints, I so wonder how in the world she did.
Great take on the prompt as well! For a while, doctors thought I may have a RA, but it seems to not be the case as of now. Wishing you many healthy, painless days.
[…] the sick part: for the past two years I have lived with an illness that robbed me of my appetite. It made me nauseous, feverish, and too achy to want food. While I […]
Beautiful. Touching. Honest. Thank you.
Thanks for baring your real thoughts…. Thanks for helping me understand just a little better.
[…] one day when I awoke to rheumatoid arthritis. Pain, fear, pain, dread, pain, […]
I came to your blog by pinterest, interested in finding fun things to do with my mother. But then I saw the tag about your rheumatoid arthritis. I read all of your blog entries in that section and found myself crying;my little jack russell coming to comfort me. Your blogs explain absolutely everything I feel. No, I am not married and no I am not a mother, but I do have rheumatoid arthritis. I am going to be 24 years old next month and have had it since I was 19. I woke up one morning in October and couldn’t move because of this terrible pain I was feeling; it wasn’t until May of that year that doctors realized I just didn’t have a bad flu. It has been an absolute struggle dealing with this disease and continuing with everyday activities. Over the years I have faced depression from it, anger towards it, staying on top of my medication, not wanting to take my medication, etc. For the past year or so, I have realized that it is the life I was given and I have to move on. I have learned different ways to do certain activities if I’m having a flare up and other things of the sort. But it wasn’t until reading your blog that I realized that I AM still angry. I thought I came to terms with it. I never complain about it so people do not know I have it until after I know them for a while. I hear comments that I’m weak or lazy when the truth is that RA is something you cannot entirely describe to someone who does not have it. Right now I am currently not taking my medication; I have so many I have to take that it makes me feel absolutely awful, although my joints feel better. After reading your blog though, I realize that I have to get back on track with it, for myself in the long run. Thank you. ????
Came across your blog through pinterest also and thought I would speak my mind ???? Have either of you heard of Nightshade foods? I also have been diagnosed w/RA after years of unexplained bone loss, aches, pains to my joints and bones at times. I have learned to control by watching what I ingest so through time evolved into becoming a Vegan Gluten Soy NightshadeFree 99.9%. I never realized how many young people have RA until I started a blog w/my food pics that have gotten me through the transition to becoming a Vegan. Anyways, what I wanted to say was if you weren’t aware or if you haven’t tried yet to keep track of what you’ve ingested before the flare ups. Take care<3
I wake up every day wondering if my shoes will fit, if I can walk, if I can sit at my desk at work without taking a maximum dose of Ultram. And I am bitter sometimes. “But you don’t look sick” is the worst thing you can say to me.
I love you. I’m so sorry. You are a strong strong woman. Hang in there. You are never far from my thoughts and prayers. Miss you sis.
Your writing is honest and hard to read for those who love you (like me). But I also know that “we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us”. Sometimes the cracks in our vessels make the treasure shine through even brighter:)
Wow. That was a great way to help those of us who don’t live with this disease to see it more clearly. Thank you for sharing that.
As I read this I began to understand the connection between depression and chronic illness as something that would be very difficult to avoid. The constant onslaught of symptoms and reminders of illness must really wear on a soul.