Put on a Show

Put on a Show

I’ve often said being young with Rheumatoid Arthritis presents some unique challenges and deciding to show my symptoms is a regular debate. I do have a disability placard for my car that I often use at the grocery store or at work when I carry multiple bags. I’ve never been asked for my ID or proof the placard is indeed, mine. I honestly haven’t even gotten many looks from strangers.

To show RA or not?

Regardless, there is always a small part of me that wants to put on a show. I’m not saying I’m faking my pain or stiffness but sometimes, I just want to exaggerate that slight limp on my right side or move my fingers a little more to show my discomfort. Autoimmune conditions are difficult because most of our symptoms are internal, meaning they aren’t seen. We feel sick, we feel the pain, we lack mobility, not to mention we deal with a million side effects from hardcore medications. If we are lucky not to have physical damage yet, we look young, we look healthy and for lack of better term, we look able-bodied.

Trying hard to keep the impact of RA invisible

I’ve spent the last eight years putting on a “brave face”. For a good chunk of it, I felt isolated and depressed but, because of my pride, I didn’t want to show that weakness. I expended a lot of energy (probably some could have been allocated elsewhere) looking healthy. I put more effort into diet, exercise, skin care, and beauty just to make sure I didn’t look sick. And, as a result, some good things happened, but I also endured some nasty comments from “friends” who just didn’t believe me, called me lazy or unambitious (they are not my friends anymore, by the way). It makes me wonder…I don’t like how drawn and pale my skin looks after methotrexate so I use an illuminating moisturizer. I drink water like it’s a paying job so I don’t look normie sick. I wear loose clothes so people can’t see me struggle in regular ones and I take frequent movement breaks so others don’t see me try and get up from a long sitting position.

It doesn’t help that I climb almost twice a week. I look happy, I look able-bodied, I don’t look like every movement I make reminds me I am potentially hastening the permanent destruction on my joints…So, am I doing this to myself? Saying no doesn’t help. People think I’m faking or making up stories. They think I’m a hypochondriac, all because they can’t see the internal agony I endure every single day. Should I show my illness a little more? Let my skin and eyes look dead when I am really not feeling well, use my cane more often or ask for help (laugh out loud, we all know that’s not going to happen)?

Hiding my disability through isolation

I found that the best way to show I’m able-bodied is isolation. I isolate myself on the days I barely make it out of bed or have more intense swelling in my joints. I don’t want people to see me weak. Aside from my family and two best friends, no one has seen me disabled but maybe more should. Maybe I should stop thinking of it as a weakness but as a way to advocate for myself and invisible illnesses.

Do you have any physical signs of your RD yet? If not, do you ever feel the need to show your illness a little more or are you like me and want to hide the signs?

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 (24)
  • deej
    3 months ago

    This disease is a trip! It sucks you dry. I push as hard as I can at work, with my family and with my boyfriend… but they don’t get it and it’s frustrating. Tired of being so tired. Over the pain and flares that don’t stop. I’m on Remicade and plaqiunel. I’m also on Revia???? Does anyone else get this for pain?

  • Monica Y. Sengupta moderator author
    3 months ago

    Hey deej,

    Thanks so much for commenting on my article! I completely feel you. Even when we show pain we’re still pushing so hard. And people just don’t get it! It just sounds like words to them 🙁

    Have the Remicade and Plaquinel helped? I haven’t heard of Revia…Hopefully other community members can speak on it!

    ~Monica

  • mcadwell
    3 months ago

    I’ve stopped hiding it altogether. I got tired of doing that after 17 years of it. I stopped wearing makeup because my hands hurt. I wear my hair long and straight now because it hurts to sit too long in the hairdressers chair. I stopped dying my hair myself because my shoulders won’t cooperate. If I sit too long I have a limp until it unkinks…that shows itself each time I walk. My joints pop out of their sockets – I make owie faces until I can get it popped back into place, which means stopping what I’m doing and contorting my body until that happens – I refuse to apologize anymore, let anyone watching think I’m weird. When it first happened I hid it. After so long I no longer have the energy to do it anymore and wonder why I tried to hide it for so long!

  • Monica Y. Sengupta moderator author
    3 months ago

    You’re right, mcadwell…It takes too much energy to put on a show sometimes. I feel like it just isn’t worth it! I am sick, I am in pain. I don’t care if other people see it!

    Thank you the reminder and for commenting on my article!!! ~Monica

  • tckrd
    4 months ago

    The exhaustion and falling asleep has been a problem since this started in 2015. I am now using remicade. These are the ones that have not worked Inflectra, Orencia, Enbrel and Humira.

  • Monica Y. Sengupta moderator author
    3 months ago

    Hey tckrd!! Thanks for commenting on my article!!

    The falling asleep is the toughest bit..It just comes on so quickly and I can’t fight it!!

    Does the Remicade help? I’m currently on Orencia and it’s so much better than any of the other biologics I’ve tried. ~Monica

  • Daniel Malito moderator
    4 months ago

    @mysengupta When I was 18 I was working at McDonalds and in one year I had to call in sick 7 or 8 times due to my illness. One day I came into work to pick up my check after a family vacation and on the check was written “turn in uniform – too many abscences.” They didn’t even have the courtesy to tell my to my face I was fired. They knew I was disabled, but when they finally found a legit excuse to fire me (family vacation requested time off ran a day late) I was gone. Unfortunately it’s the simple truth for people like us. Keep on keepin’ on, Daniel P. Malito (RheumatoidArthritis.net Team Member)

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey Daniel!! Thanks for sharing on my article! That really really sucks!!

    Whenever I talk about putting on a “healthy” front at work people always say ‘it doesn’t matter, you can’t get fired for your health/disability’. Of course, I can! The work can cite any number of reasons. I was mostly afraid during my time as a vet tech that they would come back and say “you just can’t keep up with the work.” Even with accomodations that’s a totally valid concern. I need strength and ability to wrangle animals, otherwise it can get dangerous for me or the animal or anyone else involved!

    Anyways, that was a really long-winded reply. Thanks for sharing!! I look forward to getting to know you better 🙂 ~Monica

  • Cloudy
    4 months ago

    I’m in my 50s. Most of my peers are showing their age now, but they still look pretty good and they haven’t slowed up much. Then there’s me. I have white hair, I move slowly and stiffly, and quite often I’m struggling so much to keep up that my brain moves slowly too! No problem – people just assume I’m in my late 60s or maybe early 70s…. But I’m not! I will be soon enough, but I’m not there yet. I wish people knew that this is me in my 50s with RA, not me in my late 60s with reasonable health. So I find myself mentioning the RA as often as possible – and then I’m cross with myself for being so absorbed in my problems that I have to talk about them all the time. But I just want to be seen as what I am and to be responded to as I really am, and RA is so pervasive that it has become part of what I am. I don’t like that, but it’s how it is.

  • magienoire
    3 months ago

    The reduced activity, stiffness, fatigue, thinning hair, medications, memory loss…
    At 49, I feel like I’m 79!
    In fact, that’s basically what the orthopedic surgeon told me five years ago before I got diagnosed – “You’re 44, but you have the knees of a 74-year-old.”
    I fit in better with my mothers’ friends than with my own friends!

  • mcadwell
    3 months ago

    I understand. I used to feel 16 sometimes but now I feel 116 most of the time! lol Don’t feel cross about being absorbed – you have to be absorbed when it comes to chronic illnesses. It takes over your life and requires constant monitoring!

  • betharooski
    4 months ago

    I agree 100%. I too am in the glorious 50s but feel much older. Sigh! My local Senior Center admits only 60+ folks. Hey! I feel older so why can’t I join in on their activities? I know what you mean. I earned every gray hair on my head. Bless you too!

  • Mary Sophia Hawks moderator
    4 months ago

    Great article Monica! For myself, I have found that honesty works best. If I feel horrible, it’s written all over my face, and I move slowly too. I refuse to pretend I feel okay just to make others feel better. What actually happens is that healthy people don’t want to see others suffer, because they are afraid. No one likes to think that suffering can’t be helped. I don’t purposely display my RA, but there are days that it rears its ugly head to everyone. If you isolate yourself on bad days, then no one sees what it’s doing to you and they won’t understand. I recently had to tell a friend no, and she was trying to talk me into meeting her for a drink. I told her I had a flare, but she insisted a drink would help. Finally, I had to tell her that it was all I could do just to get to the bathroom and back to bed. Her response? “Are you kidding? Come on, it’s not that bad!” After I got over my shock, I informed her that I was taking Percocet around the clock, just so I could get to the bathroom. She finally said, “I just can’t imagine being in that much pain. I’m sorry.” People without RA/Fibro, etc, just can’t imagine. So don’t feel like you have be Wonder Woman. Be yourself. Others will begin to see and think.
    I think it’s great you can climb!

    MS

  • Monica Y. Sengupta moderator author
    4 months ago

    Thanks MS!! This is was a lovely comment. You know how much I appreciate when you comment on my articles!!

    I thankfully haven’t had a friend be down right brazen like that but I know most of mine just don’t say it out loud. Probably because I still climb and force myself to be active…

    I hope by talking and writing about it people begin to understand that there are physical internal struggles and everyone is dealing with something. No matter the smile plastered on their face (no matter how strained) or the “easy” walk to the living room and back.

    Thanks again!! ~Monica

  • BeccaFloyd
    4 months ago

    As a fellow young person with RA (I was diagnosed at 4 years old), I can completely relate to what you write here. My friends group doesn’t get together as often as we used to (busy lives, marraiges, kids, careers, etc.), so when we do see one another, it’s easier to hide my symptoms as I am usually able to pull myself together for the evening. This being said, they don’t know that I’ve been saving up my energy all week, that it took me two hours just to work up the energy to get into the shower, that once the night is over I will limp from the car to my home, give my dog some love, and sleep until the late afternoon of the following day. That I will be in even more pain than usual for at least the next few days, that the possibility of another get together within the week is pretty much a no-go. These days, I’m lucky if I have one social event a month other than just with my husband. With him, I can tell him at 6 pm that I’m just not feeling well enough to go to that new dinner place we were going to check out that night. That I’ll need him to do the grocery shopping, the vacuuming, oh and could you please rub some of this on my knees please? My husband is the only person who knows the true extent of my disability, the only one who has held me as I cried from the pain, from the unfairness of it all. I’m only 35, yet I feel so much, much older. In my twenties, if a friend texted me at 3 pm to ask if I wanted to join them for a hike after work, I’d text right back and pack my bag. I’d go out bar hopping downtown Friday night for a friend’s birthday, then head out again the next night to see my favorite band play. I’d go to three day music festivals, and my biggest complaint afterwards would be a mild hangover. Now, I’d probably end up in the hospital, which is why I have to decline invitations I used to jump at. As my RA worsened, the cancelled plans and the declined invitations increased, until the invitations pretty much stopped coming. Yet if you asked any but my closest friends, they probably wouldn’t even be able to tell you I have a disease, certainly not what it’s called, because I hide that part of my life from them. It’s not exactly a fun party subject, my growing older and more ill at a frenzied rate. The scariest unknown I face is what the future holds, if in just ten short years, my ability to do the things I once enjoyed has diminished so rapidly. I know the time will come when I am no longer able to hide my symptoms from everyone but my closest loved ones, and perhaps that will be a bit of a relief. Maybe then they’ll understand I’m not a flake, I’m not purposely unreliable, I’m not lazy or undriven… I have a disease. A real, honest to goodness disease that has a real, honest to goodness impact on my life, every minute of every day. Maybe then, I’ll even be a little gentler with myself, and see myself as less of a undriven, lazy flake as well.

  • kkharrod
    4 months ago

    Thank you so much for sharing. I hope you slow in decline or even get blessed with remission. I am glad that you have an understanding husband!

  • kkharrod
    4 months ago

    I totally understand saving up energy and planning days in advance in order to attend a family gathering and then be exhausted in an hour and a half and leave early, and then go home and crash for a day and a half. It’s worth it though. I’m learning to pace myself and feel symptoms coming on so that I can stop or leave and get to bed before a cause a big flare. It helps me enjoy treasured moments! Thank you all for sharing and understanding!

  • tckrd
    4 months ago

    I don’t have a choice. I have to use a cane every day. If The walking is to far I have to use a motorized chair. It doesn’t bother me to show this I am in pain and need help. Sometimes the pain is so intense it becomes a hard time just holding the controls on my chair. It’s taken me 10 minutes to write this post because I fall asleep. I am on my 4th biologic along with various other dmards.

  • Monica Y. Sengupta moderator author
    4 months ago

    Oh no, I’m sorry, tckrd!! Is the sleeping a new symptom or something you’ve dealt with for a while? What biologic are you on?

    Thanks for the comment and for sharing on my article! ~Monica

  • kkharrod
    4 months ago

    I think that sounds like most of us. We are fortunate that new medicines prevent or delay deformities that were once apart of everyone’s life who had RA/RD. The deformities are what people expect. I’ve even had a doctor tell me that he never saw a person with RA that didn’t have crooked fingers. However, the medicine doesn’t seem to stop all the rest of the symptoms that put our misery levels sky high–like pain, fatigue, and flu-like symptoms. It takes a great deal of energy and planning to look normal and to try our best to be able to enjoy special events when we can make it out. Like most, I isolate and enjoy the company of my dog and you all on this site–thank you for understanding!

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @kkharrod! Thanks so much for sharing on my article!!

    And we’re spending energy we already don’t have (as our bodies zap us of most of them so we can feel tired, flu-ish and painful!) But, it’s all internal and other people can’t see it.

    I’m glad your dog provides comfort for you!! Mine does as well, even though she can’t see my symptoms she senses it and helps me through the day!

    ~Monica

  • Daniel Malito moderator
    4 months ago

    @mysengupta I have had RA since I was nine years old, and I can’t tell you the amount of times I’ve wanted to hide it when I was younger. I get that. Nowadays, sometimes I will even exaggerate a limp when getting out of the car in a handicaped spot, just to stave off those potential defenders of truth and justice I see watching me like I hawk when I pull up. It’s always going to be a question you’ll have to consider. Keep on keepin’ on. Daniel P. Malito (RheumatoidArthritis.net Team Member)

  • starscream
    4 months ago

    I hide it at work because I’m afraid it will effect promotions. I already have a flex time job, so I can work on my good days and I’m lucky to have 5 good days a week. My days off I’m just rest. People know I have allergies because of the foods I don’t eat and if I have a flare on a day I needed to be at work and cannot make it, I will say I ate the wrong thing. I’m not lying. It is an autoimmune disorder which is essentially an allergic reaction.

    Among strangers, on subways and buses, I will ask for seats saying I have a bad knee and use a cane so that I don’t look evil to be using up space in the handicap elevators.

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @starscream!! Thanks for sharing on my article!! I’m glad you’ve found some accomodations to help with work and just getting through the day. I sometimes bring my cane with me as well, so that the older folks don’t give me “the look”.

    Glad to know I’m not alone!! ~Monica

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