Wearing My Flare on My Sleeve

Wearing My Flare on My Sleeve

I never asked for RA. I didn’t do anything to cause it, and I certainly don’t deserve it. But I have it anyway, and I’ve come to accept that fact and get on with my life. In a way, I’m lucky. None of my joints are distorted or deformed, even though I’ve had RA for almost 28 years. The disease may be wreaking havoc inside me, but you’d never know it by looking at me.

Except … when I wear it on my sleeve.

When I’m flaring, sometimes I need to use a mobility aid, like a cane or crutches. Sometimes I might need to wear a splint on my hand, or a brace on my elbow. Maybe my RA is making me feel exhausted enough, or I’m hurting badly enough, to choose to park in the handicap space at the store. I have the blue placard that gives me legal access to it, and I have a real disability.

When I’m flaring, using one of these mobility/occupational tools shows me up for being ill rather than healthy. And there’ve been times, I’ll admit, when I’ve been embarrassed using them. My compression gloves, for instance, make me feel dorky if I wear them in public, particularly on warm, sunny days. And when I’ve parked in a handicap spot in a crowded parking lot and walked away from my car normally, the looks I’ve gotten should have melted me into a puddle in my shoes.

People wouldn’t look at me like that if my foot was in a cast and I was using crutches to walk, or if I was using a wheelchair. I don’t like it when this happens, but I try to ignore them. I’ve no reason to hide my RA. Researchers don’t know yet what causes it or how to cure it, and I’ve no reason to be ashamed of having it.

RA just is.

Compression gloves often soothe my RA hands enough that I can run errands. With them, I can take things off store shelves to put in my basket. I can fumble my wallet open. I can carry bags into my house. Most of the time I can do those things without my gloves, but I’d hurt a lot more.

If my right knee is hurting me enough that I can’t walk with my usual careless confidence, I’ll use my cane. It takes part of the strain off that knee and helps me walk. It also makes me safer; a wrong step on that bad knee could make me fall. Does wearing my fingerless gloves or using the handicap space make me stick out? Probably. But if someone brings it up, I’ll tell them why I need it. Maybe that person will understand RA better after we talk. Maybe she’ll think before she judges the next person she sees.

I’m glad I can use mobility and other types of aids to help me cope with my RA. My cane can mean the difference between staying home and meeting my responsibilities. It allows me to be active and independent.

All these things—a splint, or a wheelchair, or compression gloves, or crutches—are just tools. So is the blue placard I keep in my purse in case I need to park in a handicap parking space. I’m not embarrassed to use it if I need to, even though there are times when I look perfectly healthy. I only use it when walking longer than I absolutely must will cause me more pain and exhaustion than I can deal with.

There are many great tools for RA. I have eating utensils with thick handles, made especially for when my knuckles are flared and it hurts too much to grasp a conventional fork and knife. They look funny, but so what? I have a little tool that helps me button my shirt and one that helps me put my socks on my feet when my hands are bad. Some of my tools are visible and some are not, but I’m not ashamed to use any of them.

We aren’t embarrassed to use a hoe to help us plant seedlings, or to use a basket to carry fresh vegetables in from the garden. We drive cars or ride bikes instead of walk. Those things are only tools, just like mobility scooters, shower chairs, and rubber jar openers. Use them with pride and defiance. You may have RA, but you can stay active, mobile, and independent in spite of it.

Are you reluctant to use visible RA aids in public?

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

View Comments (18)
  • Robin
    4 years ago

    Yup. Totally embarrassed (proud) to use helping aids. Well other than ace bandaids and splints, stuff normies use occasionally when temp injured. When I walk away from my car, and grab the shopping cart(hidden walker), I don’t have to face 2 hrs (pain and confusion leads to very long slow shopping trips) of looks and prejudice. I’ve been told I should use the motor carts…no way I could endure the rude looks and whispers that ppl get as they pass…like, ‘maybe if he/she walked wouldn’t be so fat.’ or the eye rolling and ‘pffts’ just audible out of the person on the carts range (they assume) but loud enough for other shoppers to turn and look and judge for themselves. I’m terrified of having to face that. One cause it hurts…two because, as a former human rights campaigner, I sometimes get mad and get up, right in their faces, which again only a few see the jerk’s actions/comments so it make me look like the nutbag. I stay out of view, out of public as much as possible. There are others who are so very kind…but even that gets embarrassing as they make a big deal so everyone looks and sends judgements, whether it be pity or judgement of faking. Either is just humiliating. I’m too proud I know, but it is so much easier being on the other side of helping. Sux being the broken one…sometimes I wish I looked like Quasimodo so I wouldn’t have to explain or have men interested an have to field the question if I’m ‘able to…’. No sense in going out with someone if I am broken in their wants. Whole thing just evil and vicious…more often than not I wonder how ppl can believe in a God that allows things like this. Why ppl survive bizarre trauma’s to live…no, wrong I don’t live, I exist…like this. 🙁 I truly wish I had not survived my accident.

  • Maxine
    4 years ago

    Coping with RA is really hard…I’m very independent and find it hard asking for help at times. So when I am having a Flare I shut myself off from doing activities that I may need help in doing. I haven’t applied for a blue placard or rarely use the riding carts in the stores because I feel that there are people who may need it worse than I…so I’d rather deal with the unbearable pain than have people starring at me thinking that I should be walking. My husband /family are very supportive but I can’t begin to explain how I feel.

  • Lily
    4 years ago

    I use my placard and the scooters all the time even though I get some bad looks but I just ignore them. What I’ve been reluctant to use is the cane. I have it in the car in case of an emergency but I don’t feel comfortable using it. I have had some bad experiences when I try to use the handicap stalls. And I am the kind that makes sure that whoever is using the parking space is allowed to use it. Otherwise I make some trouble about it

  • teva
    4 years ago

    Thank you for writing this article. I am 36 and this is my second year with moderate to severe RA. I would like to know what types of mobility aids other RA patients have used and adaptive equipment. I would like to improve my quality of life and complete errands and minor task during flares. I have issues with swollen hands, knees and hips. I currently use nothing. Either I go to a store with a riding wheelchair or I stay home. Just being able to walk walk with an aid or complete routine task like dressing myself or errands would be great. I wasn’t aware of special eating utensils so that alone would be helpful. Please help me I don’t have the best dr. and have been making due or playing catch up finding out things as I go. It is a great help to chat with RA patients because life skills are passed down faster than they are learned. Thank you

  • Wren moderator author
    4 years ago

    Hi Teva!
    I’m so glad you stopped by, and that you took the time to comment. You’re absolutely right that learning easier ways to do things, and ways to better cope, is best learned from others who share your challenges and understand what you’re going through.

    If you can, ask your rheumatologist to refer you for occupational therapy. It’s absolutely invaluable. The therapist can teach you all kinds of ways to save your joints, exercises to strengthen them, and suggest aids for everyday living. The one I saw made sure I got a raiser for my toilet seat–which I haven’t used yet, but I’m glad I have for some-day–and other aids, like a long-handled shoehorn, a button-hook, a jar opener, and fat-handled eating and cooking utensils. All of them can make a world of difference when you’re in pain.

    I also have a cane. Fortunately, no need so far for any other type of mobility aid, but when the time comes, I won’t be shy about getting it. I believe the more independent we can be, the better. It’s good for our bodies and good for the soul and spirits.

    Here’s a couple of links to some helpful catalogs, chock-full of items that can make your life a little easier.

    http://www.thewright-stuff.com/products/arthritis/

    http://www.healthproductsforyou.com/

    http://www.arthritislivingaids.com/

    Wishing you the best! Come back soon. 😀

  • Antonia Maritima
    4 years ago

    Hi Teva,
    I am going to include links for the things that help me:

    I have large grips on my pens and pencils. These make holding and writing much easier.
    http://www.amazon.com/Pencil-Grip-Universal-Ergonomic-TPG-11106/dp/B001SN8HOY/ref=sr_1_1?ie=UTF8&qid=1428080393&sr=8-1&keywords=ergonomic+pencil+grip

    I use an ergonomic keyboard for my computer. This puts my hands in a more natural position. Friends who sit at my desk have trouble using it, but it lets me do my work-from-home job.
    http://www.amazon.com/Microsoft-Natural-Ergonomic-Keyboard-Business/dp/B004SUIM4E/ref=sr_1_2?ie=UTF8&qid=1428080512&sr=8-2&keywords=ergonomic+keyboard

    I use a walker when I go out. It helps me keep my balance (I am known for tripping over nothing, and developing bruises that last for weeks! The walker also has a seat so I can sit to rest. I often use the walker as a chair when I go to events because it is a little higher, so it is easier to stand up. These walkers are called Rollators. (no link for this…the field is SO big. pick one based on your size.)

    I use a reacher to help me pick things up off the floor or grab light weight things from a high shelf. I have one that is magnetized for the times when I drop metal jewelry making supplies on the floor. The link is for my favorite (I have 2 that are identical…in addition to the magnetic version). It can pick up the tiniest of things with precision.

    http://www.amazon.com/Ettore-49036-Grip-n-Grab/dp/B001B13PC2/ref=sr_1_2?ie=UTF8&qid=1428080731&sr=8-2&keywords=reacher

    I use a sock assister because I am quite stiff, so bending for socks is almost impossible. This works so well…and is so easy to use. Put the sock on the half tube, drop the half tube to floor (keep ahold of the handles), slide my foot inside, and pull the handles until the sock is on my foot and up my ankle. Yay! Socks are on!

    http://www.amazon.com/Sock-Aid-Wide-Style-Adult/dp/B007G4UORW/ref=sr_1_9?ie=UTF8&qid=1428080834&sr=8-9&keywords=sock+assist+device

    I usually buy bras that clasp in front.

    I use a stool in the shower due to balance problems. Or I do a sponge bath at the sink if getting into the shower is too difficult.

    I have a disability placard (it’s hard to read ‘handicapped’ placard. The disability community has worked hard to change the term to disability…handicapped has a more negative connotation). I use a motorized wheelchair (provided by the store) if I have to. I often ask for assistance with getting my groceries (or other purchases) to my car if I know I am going to have a difficult time.

    I use compression gloves sometimes. They are not always comfortable and don’t seem to always help. I sometimes use compression stockings, but they don’t always help.

    Feel free to respond to this and we can keep the conversation going!

    Toni

  • Terrie Spradley
    4 years ago

    I was diagnosed with COPD over 10 years ago, which started from a severe infection that left my heart and lungs damaged. Diagnosed with neuropathy shortly thereafter (believed to be caused from high doses of steroids)when my feet and ankles were in so much pain I could barely walk. Having pain in my thumbs, I was sent to an orthopedic surgeon. He said I needed joint replacements. Having just been diagnosed by a Rhuematologist who had been treating my osteoporosis for three years with annual runs of Reclasp, she witnessed me rubbing my hands and I told her about being told my thumbs were bad but now it seemed to be spreading to include the first two fingers on both hands. She took one look at them, ordered blood tests and X-Rays, showing me that I had RA. Thinking back, it had probably been a factor all along but no one thought to check before. Hypersensitive lungs, atypical asthma, COPD (although I never smoked), constant infections & hospitalizations, neuropathy (without diabetes), very high CRT levels (as far back as 2003) but wrote off to inflammation in my lungs and that I probably had osteoarthritis, etc. I even have fallen 6 times last year with some substantial injuries only to be told by one doctor that it must be mental or sudden clumsiness.

    Having said all this, my point is that I have been dealing with what can appear to be an invisible disability for sometime. I fought the use of any assistance until my doctors convinced me to accept some help. I agreed to the placard because they were right, it was enough getting to and from the store, let alone walking all through it. Taking a riding cart when I just didn’t have the strength to walk, boy that gets you some great looks. The doc who said I needed joint replacements also said injections with physical therapy would only be a short term fix for me but I chose that instead of surgery. He was right but I was given these wonderful gloves/splints. They were helpful to this day when my hands hurt so bad even if I am not trying to use them. Yes, you sure get weird looks with them! Like you’re some kind of biker or weight lifter, parking in handicap, riding a cart. Now if I have to wear my O2 or be in my wheel chair I don’t get those kind of looks but then it’s the looks of pity which can be worse. It is a very hard disease to battle but it is good to know we aren’t alone. It is good to witness public awareness increasing and being more sensitive. Of course we still have a long way to go.

    I feel one of my current soap box is about the handicapped spaces. Often times they may be there but they are farther away then the regular ones and/or they are always full. I have personally approached management at several establishments only to be told they are following the law!!

    Well the law needs to be adjusted because not all handicapped people are in wheel chairs. There are many of us that the struggle is walking so far, especially if the ground is slippery. If I am using a walker it is just as rough. The requirements should be a percentage of total available spots be handicapped and those closest to the door.

  • Tracie
    4 years ago

    You read my mind Wren! However, the only times I have used mobility aids were when I had my hip replacements in 2006 and 2007. I have always walked with a limp, so that, I feel puts up a “hey look at the disabled person” sign on me! I have had a parking placard from the time I had my first car which was in 1991! BUT, I rarely use it. I say to myself ” oh someone else needs that spot more than I do”. Depending on my amount of stiffness, pain , and course attitude for the day will determine if I park “up front”. I know the day will come when I will have to use a cane and then a walker and eventually a wheelchair. But until then I just smile on the outside, cringe on the inside ,and stay strong!

  • Debra Lujan
    4 years ago

    HI Wren: You are right I feel guilty when I park in handicap and you look normal, but by the time I get done shopping with one of their wheel chairs I can barley walk back to the car to drive home. People don’t realize how Ra effect every move you make. All the reaching for stuff on the shelves use your back, shoulders and arms. I also have ankyloosingspondilytis arthritis of the spine. People can’t tell how bad your back is hurting or burning.
    I also feel embarrassed when I have to use the walker if we are going places with out wheel chairs. I am only 50 and I have been dealing with RA for 38 years. I feel the walker just makes me feel and look older.

  • Carla Kienast
    4 years ago

    Ah, yes, the constant balancing act. We don’t want to appear disabled, but we want people to acknowledge and accept it when we do need the help. The ones that get me are the ones that berate me when I use the handicapped stall in the restroom. One of these days I’m going to pull down my slacks and show them my hip and knee replacement scars. 🙂 (That would certainly be a bit more controversial than waving my blue parking placard at them …)

  • Wren moderator author
    4 years ago

    WooooHooooo Carla!

    I must be really lucky. I’ve never had anyone directly confront me in any “handicapped” situation, only got/get the occasional stink-eye. Somehow, we really do need to increase awareness of invisible illness/disabilities in the general public. It’s an added humiliation to have to explain to others why you used the handicapped stall or parking space.

    Thanks for stopping in and adding your two-cents-worth! I’m still chuckling. 😀

  • Judy Hall
    4 years ago

    I have walkers and a cane but I am embarrased to use them. If I use them then people will know I am disabled and what will they think. I don’t like how it makes me look. I know I need to use them because I have fallen a few times. I am having a hard time accepting my autoimmune diseases. How do I get past it and accept I have RA, Sjogrens, Hoshimoto, Alopecia,IBS and Chronic Fatigue. It is overwhelming.

  • Wren moderator author
    4 years ago

    Acceptance can be, and is, very difficult. You’ve got a huge task of acceptance on your plate, Judy, and it’s no wonder you feel overwhelmed. Please know that we–the many people all around you who share your chronic and other illnesses–understand how you feel.

    As I mentioned in my post above, I see my mobility and other aids as tools. It takes work, because we’ve all been conditioned to think of them as symbols of being sick, not as good as everyone else, and inferior. But this is false. My cane is not a symbol. It helps me walk and be independent. It helps me be strong. Yours does the same for you.

    As for what other people think? Who cares? If they think less of you for using a walker, then they’re small-minded, ignorant types you wouldn’t want to spend your time with anyway. I hope you’ll be able to come to see your mobility and other aids as symbols of strength. Because, you know, it takes a great deal of it to keep going, day by day, while coping with chronic illness.

    Thank you so much for commenting, Judy. I hope to hear from you again soon. 🙂

  • Danielle
    4 years ago

    I’m 29 years old, and I work as a receptionist. Many days I wear my compression gloves which bring my overused sore hands some minor relief. Some days I get tired of comments about them. Sometimes I just agree that my hands are just cold. Other times I’ll explain I have arthritis, but then I end up listening to either how I’m too young to have arthritis, or some other comment about how I should try xyz diet, or oh I know how it is, I think I might have arthritis in my little pinkie. I want to educate people, but at the same time it can become exhausting.

  • mcadwell
    1 year ago

    I feel for you, very much so!

    Yeah, the worst ones are:
    1. If you only exercised more, you’d feel better;
    2. If you tried xyz you’d feel better;
    3. My cousin’s best friend’s mother’s uncle had the same thing you do. He put 4 drops of unicorn oil on his tongue and was cured. You should try that too.

  • Wren moderator author
    4 years ago

    Hi, Danielle!

    Oh, I do hear you! Sometimes these tools we use for mobility and comfort or support can bring tiresome attention we just don’t feel like dealing with. Like you, saying that my hands are cold works on days like that.

    Being our own advocates is a great thing, but like any great thing, a little can go a long way. When people try to tell me what I should do to “cure” my RD, I just smile and nod and thank them for their kindness. Then I change the subject. 😉

    Hang in there. Keep doing what you’re doing to help yourself cope with your RD day by day. And please remember that you’re not alone, OK? Thanks for stopping by and commenting. There are people reading at this very moment who are nodding their heads knowingly, in solidarity, and with empathy, at your words.

  • Lyn
    4 years ago

    Im 37 and when I use my blue card to park in the disability car park in my jeep which is for sale at the moment because I cant drive a manual anymore, the looks I get and the shakes of heads is unreal.
    I had a young man with his son standing in the car park blocking me from parking a couple of weeks ago, and he yelled “this is a disabled park”, I grabbed my sticker and said move- younger people have disabilities too you know!, he replied, ‘yeah you really look sick” I grabbed my cane and said if you don’t move I will put this where the sun don’t shine, and he moved, but kept abusing me shaking his head the whole time. It really bothers me, that some people do not understand.

  • Wren moderator author
    4 years ago

    Oh, Lyn! That’s just awful! I’ve gotten looks from people a few times, but I’ve never had anyone confront me. You’d think the fact that you have a sticker would be enough–and then, a cane!–but some people are simply too stubborn to open their eyes and minds a little bit further.

    I once forgot to put my placard on the rear-view mirror when I left the car, and when I came back out less than 10 minutes later, I had a ticket for $450 waiting for me. Fortunately, I was able to appeal it by providing my placard number to the county, and by telling them I’d been absent-minded and air-headed and forgot it, but believe me, I won’t forget again. It still cost me $25 in admin. fees.

    If there’s a bright side to overzealous protectors of handicap parking slots (and I must, always, find a bright side, sorry), it’s that without them, many more people would just park in those spots. They wouldn’t care that they might be making a disabled person’s day just a little bit–or maybe a whole lot–worse. So maybe when we get nasty looks from people, and particularly if we’re confronted like you were, it would be worthwhile to thank them for being so vigilant on our behalf. Maybe it would defuse the situation and, if we were to explain that not everyone who’s disabled LOOKS disabled, they’d be less hostile in the future.

    I can always hope. Thank you so much for commenting! 😀

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