I’m Proud Of My Arthritis Hands

RA Guy Adventures of RA Guy 36 Comments

“One of the first concerns that came to my mind after I was diagnosed with rheumatoid arthritis was what was going to happen to my hands? As a lifelong designer and avid cook my hands are essential for doing the things that make me most happy in life. Doing Google searches for ‘rheumatoid arthritis hands’ did nothing to quell my fears. In fact, seeing the image search results only made me more nervous.

Over the years, however, my hands have continued to show me that they are strong, even as they bear the brunt of the chronic disease with which I live. My hands may not be able to do what they used to—opening a jar has become next to impossible—but they are a true testament to the power of adaptation. My hands continue to chop, cut, stir, and mix…and when they’re not able to do as much, they happily pull out the food processor and adapt recipes accordingly. I don’t spend as much time in the kitchen as I once did, but when I do it feels like a true treat. I love the smells, the tastes and the textures.

When my hands are doing well enough to grind spices, I pull out an old grinding stone that I inherited from my great-grandmother. I only have a few memories of her, but remember her walking with a pair of crutches. While no one can tell me what actually afflicted her, I’ve been told that her hands were very crooked and always hurt. Might she have lived with rheumatoid arthritis as well? I’ll never know, but when I hold the pestle, the same one she used to hold every day as she worked in the kitchen, I feel a special connection to her. And I tell myself that if she could get through the pain and disability, so can I.”

The night before last, my right hand flared like it has never done before. I woke up in the middle of the night, trying to figure out where the excruciating pain was coming from. As soon as I saw my hand, I had my answer. Three of the four knuckles (minus the pinky) were covered by a bright red oval that looked like it had been painted with a red Sharpie marker. I turned my hand over to look at the palm, and saw the same thing.

A few seconds later, I realized that I was completely unable to move my fingers…not even just a little bit. The idea of individual knuckles was a distant memory, having since been replaced by one large puffy swath.

Instead of fretting about the almost complete loss of use in my right hand (luckily I’m left-handed…but still!) I fell back asleep. Not a true sleep, mind you, but some weird place that I often go to when I’m in a major flare. I both feel my pain and don’t feel my pain, all at the same time. I’m fully aware of my thoughts, but I’m not completely present. I’m so exhausted that even resting seems to take more energy than what I can muster. I’m awake, but I’m also asleep.

I’m supposed to sleep with an ulnar deviation split, this contraption with a padded metal rod along the edge and Velcro elastic straps for each individual finger, including the thumb. The idea is to keep the hand, from the wrist on down, in it’s “correct” position. My hands are not as damaged as some others that I have seen, but they’re definitely past the point of trying to pop them back into the “right” place.

After the few minutes it takes to get all of the straps in the correct position, it’s nice to see my hands looking more “normal” than usual…but within an hour, the pain is just too unbearable. My hands have a new “normal” position, one that takes into consideration the constant swelling and tugging of all the different parts inside. They are only able to experience a little bit of comfort by giving into the constant inflammation, by slowly changing their shape. I’m supposed to sleep through the night with these gloves, but I rarely ever put them on any more.

My hands have changed, and they continue to change. Some might say they’ve changed for the better, while others might say that they’ve changed for the worse. I like to say that they’ve changed for the necessary. The thought of strapping them into a position that they were once “supposed” to hold no longer seems like a smart idea to me. Yeah, I know…there’s always the notion of trying to prevent future damage, but there is also the reality of what already taken place and what continues to take place.

And as as I lay there in my “flare space”, a new thought entered my mind. I not only needed to accept my hands for what they are now, but I also needed to be ready to accept them for whatever they might become in the future. They will, after all, still be my hands. Over time they’ll probably continue to look less like other people’s hands, but that’s okay…for me, they will still be “normal”. They will be my normal.

I will never be ashamed of my hands, no matter what they look like.
Not every person I encounter is going to be able to understand why my hands look this way, but those of us who do know the reasons will also know the truth: rheumatoid arthritis hands are a visible sign of the enormous strength of an individual who has experienced so much pain, that their hands have literally been pulled out of shape. I, for one, am proud of my hands. They have endured a lot, and will continue to endure even more. I will never be ashamed of them, no matter what they look like.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 36

  1. Nan

    another great post that really “puts the finger” on how our hands are impacted by RA and all that goes with that realization…

  2. Macksmom

    So grateful you shared this today! I never realized I loved my hands until I looked down and saw a stranger’s hands at the end of my arms. Usually, I joke about it and call them my Minnie Mouse hands, but lately I’ve been struggling with some of the changes. After your post, I’ll never feel that way again. Thanks, Mr. Guy!

  3. Stephanie Curry

    Yes our hands are so very special to us! Thank you for your story RA Guy – hopefully one day they will beat the RA and discover that cure so that we don’t have to expect the unexpected.

  4. Carolyn Roberts

    Thanks for sharing this RA Guy. All of my fingers have now drifted sideways and down and look pretty damaged. So many people say to me, “oh look at your poor hands”. But dont lose hope. I use a computer a lot at work and can type quite fast, and it keeps my fingers mobile which is great. I dont have a lot of grip but my fingers are still flexible. I can type faster than I can write now. Also, most of the pain has gone from my hands now – so please stay positive about it. But I still hate seeing photos of me with my hands showing!!!

  5. Moselle

    I wish I felt the way you do. I am not able to look at my hands and love them. I’m not a superhero like you.

    I’d like to know about the ulnar deviation split you wrote about. Where do I get one? Do they really help? I appreciate it if you could let me know. Thanks.

  6. Post
    RA Guy

    Moselle, I think I ordered my splint through Sammons Preston – a quick web search on “ulnar deviation splint” should also give you the info you’re looking for (depending upon your location).

    Whether they really help or not, my guess would be that it depends upon the current state of one’s hands. For me, they’ve always been too painful to wear, so I’m sure that I have not benefited a great deal.

    It took me a long time to get to the point of accepting all of these different aspects of my illness; I wish you the best on your journey with RA!

  7. Cecile

    RA Guy, your posting comes at the right time for me, as last night i began a horrific multiple flare that involved both my hands and my L foot where I have visible bone damage on x-ray. What makes it excruciating, is it involves 3 knuckles and my outer wrist in my L hand. I am thanking God I am right handed, but my L hand does not let me forget it is still there.

    At year 10 without remission, I too have not had a flare like this in ages. Perhaps more noticeable now because currently I’m not able to afford my injections, and now that I need them, I must turn to Prednisone & partial relief.

    Your posting has reminded me to not give up on putting an album together I shall call, “The many faces of my hands.” Our hands do have a character we should be proud to wear, especially when we use them to help others despite our pain. Our hands have many stories to tell, even if when we share our pain, we are called “complainers” by some. Blessed are those who live with and understand what I have just written here, including you, my partner in pain…

  8. Marlene

    Thank you. Until I got this disease, I had no idea how attached I was to my hands! I do love them even if they aren’t so pretty anymore, I have hands that work some of the time, and they hurt all of the time, but they’re my hands and I love them! My wrists are turning in one direction while my fingers seem to be going in another, and the knuckles just keep getting bigger. I am in a flare right now and it’s affecting my entire body. I hurt…but I thank you for a wonderful article worth contemplating more than once. You have given me a bit of strength and a smile to go with it:)

  9. Jillbean

    I love this, it’s really inspiring and I hope to have an outlook on my disease like yours soon. Thank you so much for sharing your experiences =)

  10. Danice

    That was absolutely beautiful. I found myself tearing up, nodding in agreement then smiling & staring at my own RA hands. Thank you for sharing your very personal yet inspirational journey with the Monster (RA).

  11. April

    I really enjoyed this blog post. What a wonderful way to look at things. Im very blessed by being able say that though I’ve struggled with RA for 28 years now, my hands have somehow never been affected. My knees and hips however are a different story. I need to start looking at my legs they way you do your hands. Thanks for the inspiration 🙂

  12. Lily

    This is a wonderful post and I completely agree with you. I’ve had RA since I was 7 and I’m now in my 20s. I have a number of damaged joints, including my wrists and fingers. Somehow I’ve never felt ashamed of my hands. They are damaged, fused and look like an old lady’s hands – but they still function and allow me to do everything I have to do (including writing exams during my school career, swimming, hiking, cooking…partying :)).

    To all those who are still learning to love your RA joints, I know it may feel like the end of the world to see your body changing like this. But please don’t feel sad or ashamed by it. I know my damaged joints may not conform to society’s idea of what looks normal, but I think my body is extraordinarily strong to withstand all that it does. Our hands reveal that we are all strong people 🙂 I wish everyone good luck and lots of strength!

  13. Cathy

    My greatest fear when diagnosed with RA was that my body would change and become a little whompy. I remember times where I could hardly breathe thinking about the possibilities. After eight years of living with RA, whompy body parts really aren’t that much of a concern. I now think of them as trophies for all that my body has experienced and endured. Now if I could just feel the same way about the hair shedding. 🙁

  14. Prakasha

    I love this piece! Beautifully put. I believe it’s important to appreciate our bodies as they change in an effort to cope with this disease. Thanks for this reminder–which I needed on a day when my hand is swollen, painful and particularly challenged.

  15. Timothy

    I am proud that my hands no longer look like they did, once I shifted my perspective and chose what I wanted my reality to be, which is one different than a suffering victim, and made it happen.

  16. Pamela

    My grandmother taught me to crochet even though her hands were terribly wrung by RA and it was painful for her. I have a lovelyl pansy doily she made, framed and hung in my hallway to remember her by. Now that I have RA myself, I appreciate so much more what she was able to do. She taught me to look beyond the deformity to the beautiful person underneath.

  17. Vivianne Ellis

    A while back when I was first diagnosed I saw a sight for RA that made rings that were joined together to pull the fingers back into shape. You had to be measured for them so they were semi medical and they even looked good. They were to allieviate pain mostly…not just to look good. I will try to find the site and get back to you with it.

  18. Beth

    I’m thankful for my hand therapist who made splints for me. And my ring splints. I have splint days and not. I know, should wear at sleep all the time, but I feel like the bride of frankenstein! Argggg!

  19. Tom E.

    Great perspective I got up this morning and could not put any weight on my right leg, had pain all the way up to my hip even with the pain patch and a norco and a half. It felt like I blew another tendon that happeend last year to the point when the surgon pulled on it to sew up what he thought was a split the whole tendon came out where it had ripped loose from the bottom of my foot just taking a step up the stairs. The surgeon took a picture because he had never seen one rip loose like that and it was about 4 times the size it should be. At the least this feels like a stress fracture, but I already had an appointment with my Rheumatologist tomorrow so we will see I guess.

    I envy those of you that can stay up beat my pain levels are awful and it is hard for me to forget that even the best day is only temperary. So far I have been on all the injectables and two different infusions the last one made me so ill I got a vaccination from every thing except the Hydroclor, and one other oral. It went well for a couple of months then started down and now my legs are weaker than ever not counting the pain and I have awful tendonitis in my arms, hand and even legs and thigh area, and lastly I have horrible face pain mostly on the right but ocassionaly on the left. It feels like I am having a spike driven through my ear and down my neck. The neurolpgist says it is neuropathy which I have in my hands feet and legs. Tell me is this what RA means.

    My Brother inlaw died in a wheelchair at 54 alcohol killed him but the RA is why he was drinking. I watch my drinking but the sad truth is when nothing else works Alcohol does. I am sorry for being a bummer I had such an active life, I sold my farm, the horses, the motorcycles, and the streetrods because it was just to much pain even getting a car ready for a show. Anyway I do wish you all the best I will keep my front up for the family but this is slow tourture hopfully the Rhuematologist will have something that gives some relief tomorrow.

    Please take care

  20. Linda

    I have Rheumatoid Arthritis in my fingers, they hurt and I am developing knots in some of my fingers. I don’t have insurance so therefore, can anyone give me some suggestions on what I could do.

    Linda C.

  21. kathleen h

    I too have RA, both my ring finger pip joints have been replaced but unfortunately the op didnt turn out successful, but i dont get the pain as much there but has spread to my other fingrs, like most people i has fingers one day then the next i watched them swell to twice the size but never went down. Have a splint for bed , but find i cant pull the duvet over me so dont tend to wear it , i wear both left and right wrist supports during the day. it would be nice to sleep and wake up and find it was all a dream but reality is its here for life. infact id like just to sleep. not had more than 3 hours sllep for almost 8 months. but when i look through photos of others i feel ashamed of myself for having my moan, my fingers are not half as bad . I find worst thing now is i had to finish work as now i can not grip or make a fist,, if i tried to punch someone i could do a punch and poke an eye out at same time as now my finger does not bend. We all learn to live with the pain , but keep smiling,, thank you for reading.

  22. Laura

    The RA has crippled my hands. I cannot make a fist etc. But, perhaps unrealistically, I have become more determined to learn more about drawing. I haven’t the first clue about the right way to do this but pick a a pencil and go about doing simple line drawings most days. Yeah it has slowed me down, and I have to relearn how to do the simple things, but this I will continue to try to do. It’s something I always wanted to do and I just don’t see why I should let this “cage match” stop me.

  23. Jen

    Wow!! I enjoyed reading your perspective on this. I am already worried about and conscious of my hands all the time, and they’re not even as gnarled as they could be (and probably will be at some point). I have never thought of it from this angle, and I appreciate your positivity. I really, really needed to hear it. Thank you for sharing your experience–you’re helping to encourage and lift up people you don’t even know, and that’s pretty awesome. 🙂

  24. Lisa Currin White

    Thank you so much for this RA Guy. I’ve been struggling with this lately and have to wear compression gloves to bed at night. And why do I wake up in the middle of the night to find said gloves stacked together on the nightstand? Lol I don’t remember taking them off!! I love to crochet and love to make things and give them away to babies and children. Lately my hands have flared so badly I can’t hold the hook. I’ve tried padded crochet hooks and also wearing my gloves when I crochet, but it’s still a struggle. I will NOT give up my needlework!! I’ve told you my motto before: RA may have the upper hand right now but it will NOT defeat this girl! Blessings to you RA Guy. I’m so glad we all have each other

  25. Eimear Cullen

    Thanks so much….you have described my present condition as i have been diagnosed with RA. I wear those stints day & night, & its agony. Is there any remedy that can control the flare ups,swelling,itching????.Im on methorexate 7.5mg a week…its not controlling it? Has anyone any answers for me please….much appreciated…thanks. Eimear

Leave a Reply

Your email address will not be published. Required fields are marked *