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When the Disability Becomes Visible

Rheumatoid arthritis is commonly referred to as an “invisible disability.” Even though those of us who have the disease may be experiencing high levels of pain, inflammation and fatigue, other people around us may have no idea that we’re suffering. There are times when the only signs of physical distress that would be observed by someone without a medical background is the pallor of my face and strained look in my eye. Obviously someone would have to be very attentive and observant to pick up on these subtle signs of the pain I am in.

At times, this can be a blessing. When acquaintances, coworkers, or strangers working in stores or restaurants ask how I’m doing, it can be nice to have the choice to keep my private struggles just that, private. All too often well-intentioned people don’t realize they’re putting their foot in their mouth when they react with pity (“Oh you poor thing.”), incredulity (“But you’re so young!”), or lack of understanding (“Yeah, I’ve got arthritis in my knee from a football injury.”). On a few occasions I’ve even had people diminish my experience by saying, “At least it’s not cancer.” Therefore, there are times when I’m glad to have the option of replying to, “How are you?” with the little white lie, “I’m fine.”

That being said, having an invisible disability can make the burdens I carry seem even heavier by other people completely ignoring them. Since I may look fine on the outside, people may not understand why I have to break plans (or not even commit to plans in the first place), shy away from volunteering for things that I would love to do if not for my health problems, or why I may be a little less patient or more irritable. They don’t know the pain that I’m experiencing, and even if I try to explain it to others, only the most compassionate people seem to understand that I can simultaneously look fine and feel awful.

Then I have those times when my disease activity is so high that it makes my condition visible. Sometimes this happens when my elbows or wrists are so inflamed that I have to wear supports or splints to brace them. Literally wearing my RA on my sleeve, people then notice that something’s wrong. Likewise, if my feet, knees or hips are so painful that they cause me to limp, my arthritis gets attention that it usually doesn’t garner. While in some ways it is a relief for others to know that I am contending with pain, in other ways it adds awkwardness to situations.

For instance, last week my hip was in so much pain that I had to walk with a slight limp. As I walked up and down the gigantic staircase in the high school where I work, taking the steps one at a time with both feet on the same step before attempting the next one, I felt like Sisyphus in the Greek underworld, endlessly pushing a giant boulder up a mountain. That attracted attention, and a couple of coworkers asked what was the matter. Then as I was walking with a colleague to a classroom, he started bounding down the steps. When he turned around and saw that I was several steps behind him, he asked what was wrong. I explained that I have rheumatoid arthritis, and he said, “Oh, I have that in my elbow from tennis.” I briefly explained that it’s different because it’s an autoimmune condition that can affect all the joints in my body. He’s a really nice guy, so he asked me a few more questions. While I appreciated his concern, I really didn’t want to be talking about my RA; I wanted to discuss the work matter at hand that we were on our way to address.

At the end of the day I was in so much pain that my husband suggested that I should be using my cane. I’ve never used it at work. If I’m in bad enough shape to need the cane, then I’ve stayed home from work. Luckily my need for it is rare enough that I have that option. I was horrified at my husband’s suggestion, and responded, “But then everyone will know.” He countered that it would be a good thing if people did know, so they would be aware of what I am contending with. Tears started slipping from my eyes as I explained to him that in many ways I feel like I am trying to prove myself on a daily basis, and that I feel like it would be that much harder to do so with the preconceptions that some people make about those with visible disabilities. The ugly reality is that for some people, a wheelchair, brace, or cane connotes weakness and incompetence. That’s a false perception, but some people have it nonetheless. Last year I had to invoke my rights under the Americans with Disabilities Act, something I’d never had to do before. However, this particular work environment has not always been supportive of my needs, and I worry that using a cane at work would involve more emotional “cons” than physical “pros.”

I realize how lucky I am that this is a decision I still get to make. There may come a time when I just can’t get by without a cane. The fact is that you just can’t win when you’re a young person with a degenerative disease. When it’s invisible I often feel alone or misunderstood. When it’s visible I sometimes feel judged. The truth is, it’s hard to have an invisible disability, and it’s hard to have a visible disability, because simply stated, it’s hard to have a disability. Period.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • stormlight
    7 months ago

    I’m pretty upfront about my RA. I’m not ashamed that I have it: I did nothing to deserve it, it’s genetic, so why should I be?

    Some people are surprised at how blunt I am about it (luckily the father of one of my closest friends has it too, so she knows both what it’s like, and what’s likely to set it off), but there’s a simple reason: when someone knows, they’re more careful. I was in a supermarket a couple of years ago when I was run into by a pre-teen who’d played that time-honoured game of sprinting while pushing the trolley (cart in the States) then jumping on the back and riding it up the aisle. She unfortunately crashed into my right side and hip – the worst affected area of all – and I think the whole place heard the cry of pain.

    When I managed to get my breath back, she asked me why I’d screamed, so I explained to her. It certainly gave her food for thought, but I was very lucky not to end up in A&E! Fortunately I’m in the habit of keeping Morphine in the car in case the pain strikes when we’re out (along with a repeat prescription slip in case hubby gets pulled over by the police when I’m not with him: in the UK, it’s a £100,000 fine and/or 10 years in prison for dealing in class A drugs without a pharmaceutical licence, and him going to prison for something totally legit, is a really bad idea).

    It was that episode – and the fact I’m not touchy-feely with anyone except hubby – that lead to my policy of telling folk. At least they know not to hug me too hard!

  • Tamara Haag moderator author
    7 months ago

    Hi Stormlight,

    Thank you for sharing this experience you had, as well as your perspective. I can certainly relate to your cry of pain – it’s amazing how sensitive our joints can become with this disease.

    I agree that RA is nothing to be ashamed of. Most of the time when people have shared on this site that they do not feel comfortable sharing their diagnosis, it is not from shame but either from fear of being treated differently (workplace discrimination) or not being understood (aka, being told how to “cure” their disease, etc.). However, as you point out, if we don’t share our diagnosis then public awareness won’t happen. It’s one more of those RA catch 22s that seem all too common with this disease.

    Thank you for sharing your approach and the benefits you experience from disclosing your diagnosis.

    Wishing you as much comfort as possible with RA,
    Tamara

  • Monica Y. Sengupta moderator
    1 year ago

    I am so thankful that I can still make that decision for myself. I am used to doing things on my own and I like my solitary existence. I don’t like to use my cane at work but when I do…my co-workers know I’m doing a lot worse than I want to let on…Even when my disability becomes visible I still say “I’m fine”…I really don’t know why!

  • 1vlgqnb
    4 years ago

    As i read this post, i found myself in tears. I have been blessed with a husband who will start dinner or pick up without being told. He will often take a look at me and tell me go take a nap, I got things here. So many times when shopping, he will tell me get the buggy-car it will be easier for you. My kids have been pretty good about offering their arm or slowing their pace down as they all seem to understand better than I can when I am having a really bad day. It is trully so hard to ask for help or to show weakness to others. My knees and feet have gotten so bad I can barely move around anymore. So many times I have gotten the look, if you would just lose weight you wouldnt have the problems with your knees or wouldn’t need the motorized shopping cart. When in reality, I can barely move from one room to another. Yes I go to the gym and there are times I am able to go on a regular basis. However, when I am in a flare up, going to the gym is not an option. It is a major chore just to get out of my car and into the house. Thank you for sharing your story, it has really helped knowing that I am not alone.

  • stormlight
    7 months ago

    The losing weight thing is not only pretty tricky; it won’t make much difference beyond a certain point in the condition’s progress. My knees are still at the “geiger counter at Chernobyl” clicking stage, but my hip joints and lumbar spine are pure agony, no matter what I do or don’t eat. I figure I might as well enjoy the pleasures that are left to me, and good food is one of them.

  • Elizabeth Riggs
    4 years ago

    I am more open than you. I use every opportunity to explain what autoimmune diseases do to people, and how Rheumatoid Disease affects me. With the addition of Sjogren’s, I now add that to my explanations. Don’t be mistaken, I don’t just “button-hole” people willy-nilly and start lecturing them!! That would be counter-productive!

    I use a cane (have for several years), and I have a beautiful, yellow Labrador Retriever service dog. People ALWAYS stop to look at Warrior and to ask what he does for me. That’s when I can explain I have Rheumatoid Disease and have difficulty with hands, feet, and I also have fibromyalgia. I cannot lean over to pick up something my weak and numb hands drop all too regularly. Warrior loves to pick things up for me – it’s a game for him. People love watching him work with me. So I have many opportunities to insert a little bit about RD and Sjogren’s.

    When I was working, I didn’t know what I had, but I did hurt, and needed a cane because of the distances I had to walk. Since I was clueless at the time, I didn’t have opportunity to tell people what was wrong with me at that employment. Now, I’m homebound. I have children and grandchildren who are majorly supportive, and a husband who is a true jewel – cooking for me, dressing me, undressing me, and being generally helpful in finding items to ameliorate my disabilities. We attend an RA Support Group in Gwinnett County (just a few miles from you) monthly, and that is a great help.

    My disability is visible. And it is a true relief that I don’t have to try to hide it, or even to minimize the effects my diseases have on me. I am blessed to be accepted wherever I go.

  • Tamara Haag moderator author
    4 years ago

    Hi Elizabeth, thanks so much for sharing your experience and your perspective! It’s wonderful that you have such a strong support network, as well as such a positive spirit. If we could all be more accepting of one another, trying harder to see the gifts people have instead of being so quick to judge, I think we could have a much more supportive society. I often feel like our pop culture is becoming ever more judgmental, with 5-star rating scales for just about everything and the media focus on the negative (like focusing on the 10 pounds a celebrity gained instead of a visit to the pediatric hospital ward that she made). Your story is a beautiful reminder of the acceptance that is indeed in the world. Thank you so much for sharing.

  • Tamara Haag moderator author
    1 year ago

    Hey Heather,

    Thanks so much for these comments! Yes, I think too often others don’t want to hear about our problems, either because they don’t want to deal with it or because they feel ill-equipped to respond. And I know exactly what you mean about comparisons and expectations when thinking about arthritis in an elderly person vs. RA in young person.

    I commend you for searching for another rheumatologist. That can be a daunting process, and when we don’t feel well summoning up the energy for that search can be tough. However, it’s so important to have a doctor that looks at you as a whole person and not merely as your RA symptoms. Here is a link that may be helpful in searching for rheumatologists: http://www.rheumatology.org/Directories/Find-a-rheumatologist.

    Additionally, here are a few links about finding and going to a new rheumatologist that may be helpful: https://rheumatoidarthritis.net/video/selecting-a-rheumatologist/ and
    https://rheumatoidarthritis.net/living/meeting-new-rheumatologist/
    and https://rheumatoidarthritis.net/living/preparing-for-a-rheumatology-appointment/

    Finally, as you mention your interest in dietary changes, you may want to check out our section on diet and nutrition: https://rheumatoidarthritis.net/diet-and-nutrition/

    I wish you the best of luck in finding a doctor you can trust,
    Tamara

  • hburks1977
    1 year ago

    The problem I found is that most people unfortunately just really don’t care and that’s why we all seem to put that face on and say we’re all right even though we’re not or in the opposite way we constantly talk about it to try to get people to understand and we’re perceived as weak and you know everybody pictures the 90 year old woman out in the garden still gardening with her deformed hands and not the 20 30 40 year old that has been dealing with it for decades or as myself just a few short years and has progressed aggressively 2 a stage 3 within 12 months. I am at a loss kapow to move forward when I can’t or haven’t learned to deal with the effects of the disease the side effects of the medicine and be able to know how and what to ask and and and take control of my body and in my Physicians which my specialist needs to be replaced because I feel I don’t feel he has told me that he is only there to prescribe medicine when I mentioned dietary changes that I can do to help minimize inflammation and and flares so I’m looking for a rheumatologist that focuses in the overall approach moralistic not just these dangerous drugs that they have us on. Monica you sound like an awesome young lady and I’m so thankful that you are part of this group giving wonderful advice. Keep up the great work. Heather Burks

  • JS Stephens
    4 years ago

    Tamara, thank you for this wonderful post, you have just
    nailed it whose of us who refuse to give in to our stupid pride instead of giving our poor bodies what they need…just today, I had gone to the Mall w/my daughter & 3 of her 4 kids (12, 9 & 7 yrs. old) I have had a doozy of a week, ie lunbar epidural injections & that same evening, I was one of the 3 honorees at a nice Retirement party.
    Well anyway, I got real dizzy & couldn’t walk strait & asked one of them to hold my hand & they wouldn’t, nor did my own Daughter! I always have a foldable cane in my car, but, it was in my car!! So I told them I couldn’t believe they would not even hold my hand to help me & erupted into tears, so I left & held on to the barriors in the uppeer levels. I cried all the way home. I need to goggle how to explain RD, Fibro, Sjogrens, Spinal stenosis, and spondylolysthesis to kids that perhaps they can understand what it is that I have cause for the most part they are invisable, but there are times they certainly aren’t! I am so disapointed & hurt…but I say all this to just~Please don’t worry so much about what others will think, say or do just because you have an illness that some days is worse than other days & need an aid & we need help & COMPASSION…

  • stormlight
    7 months ago

    Your own daughter wouldn’t help you? Sheez!

    I’m surprised you had the stamina to attend that party. I wouldn’t have!

  • hburks1977
    1 year ago

    Well said. I am really enjoying reading these posts they are giving me such hope for confirmation collaboration and ways to improve our quality of life things that have work for others because we’re all so different but we all share one common core and we are all Warriors none of us are weak because the average person could not deal with this daily battle that we all face that changes hour to hour day today week-to-week and hey most of us all look fine you know that’s what people don’t understand. Education and reclassification of rheumatoid arthritis to a rheumatoid disease and more research are so greatly needed specifically in my case menopause as a relates to are a progression because I am on the onset of going through that and I think it has contributed to my progression as well as a significant car accident that I had in January 2016 I hit a log truck that was pulled across the highway and the trailer was completely blacked out total to Tahoe and I only suffered some back injury but I do think it played a significant role in my decline my daughter will tell you that you know I just want my mom that I had before the accident. We are the patients we are the ones living with this disease and somehow these researchers and doctors have got to find a way to get good information and progress their diagnosis practices and their understanding of the disease because my rheumatologist says that are eight is not affect my back and I beg to differ I’ve had lower back pain but I have all over back pain in my spine when I have a significant player so I just find that faults it’s hard because there’s no cure but after all this time there are tons of case studies that can be done on patience that are documented thousands and thousands and thousands of us it’s all about the data and the dad is there somebody just needs to analyze it compile it and interpret what the meaning and the common Trends are amongst this disease and not the differences that we have there are some very Common Core Physical mental and emotional things that we all have experience with and that should be where researchers are focusing

  • Tamara Haag moderator author
    4 years ago

    Hi Connie, thank you for sharing your thoughts and experiences! It is true that it’s so hard to find empathy, as many people are quick to make judgements about other people’s experiences. That’s all the harder when it comes from people we love. Hopefully this online community provides some support in being a place where we all “get it.” Thank you for being in our community! Gentle hugs, Tamara

  • Connie Goodner
    4 years ago

    I hate it, too when someone says oh yes I have arthritis in my knees or hands, too. Or when I tell someone about the fatigue and they say they are tired, too. So don’t ask me how I’m doing if you’re going to come up with that. I don’t think my children realize what’s even involved. One child said I was a hypochondriac. I don’t let them see me cry. It is an invisible disability until you get so damaged.

  • Tamara Haag moderator author
    4 years ago

    Thanks so much for sharing your thoughts and experiences with us, JS. I’m so sorry you didn’t get the support you needed! Here’s an article I wrote to help those without RA understand what it’s like: http://rheumatoidarthritis.net/living/have/ If you feel like it represents aspects of your experience, perhaps your daughter might be willing to read it. Also, I purchased a comic book called “Medikidz Explain Rheumatoid Arthritis” off of Amazon that you might want to take a look at for your grandkids. It does a very thorough job of explaining what’s happening inside of the body. I’m so sorry you had such a rough day. I hope you get the rest your body needs right now. I’m thinking of you and sending gentle hugs, Tamara

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