Oldies, but Goodies – “You Don’t Look Sick” – The Face of Invisible Illness … Arthritis Sure Ain’t Pretty! by Ashley Boynes

In the next two weeks, you may see some blogs you may have read before-but we think they’re really important to share with the Mid Atlantic Region and anyone else who may be reading Wellness with a Side of Life, Please-because you can probably relate.  So sit back and enjoy with us, some oldies, but goodies from Ashley Boynes.

Keep Moving,

Lisa Mauti

(Originally posted June 19, 2009)

“You don’t look sick.” Sure, to hear those words IS indeed a relief and a compliment. But for those of us dealing with chronic “invisible” illnesses, it can be very frustrating, too, because when you don’t “look” sick, people don’t understand how sick you truly are.

People are discriminated against all of the time – based on race, age, gender, sexual preference, socioeconomic status, religious background, and even appearance. Stereotypes are plentiful in our culture, and judgments are passed without the blink of an eye.

When someone is ill, the world seems to expect that person to look and play the part. Some of us, however, do not look sick all the time, and may appear to be young and “seemingly” healthy – while suffering greatly on the inside.

I first met this veiled form of “discrimination” (for lack of a better term) in high school. When I was about 11 years old, I was diagnosed with polyarticular JRA – Juvenile Rheumatoid Arthritis. I have it in all of my joints, though (usually) not all will flare at once.

Of course, my having “arthritis” of all conditions, was a joke to my peers. No one could believe that I had this “old lady” disease, and instead of sympathy, I was getting jeers. If I had to miss school or come in tardy due to a flare-up, I was looked upon as lazy, or as though I were getting special treatment. When I came in with an Ace bandage on my wrist or an ice-pack for my knee, I was a drama queen. I saw the stares and heard the giggles but never let unkind words get to me. I chalked it up to immaturity, and lack of understanding.

Ignorance can breed cruelty, and I’m sure that a lot of people don’t even mean any harm.

I learned that it doesn’t get much better with age. In college, after a semester-long medical withdrawal for a bout with Bell’s Palsy (the left side of my face was paralyzed), I came back – but still was not quite myself. Not only was I recovering emotionally from partial facial paralysis and 35-pound weight gain from the steroid they put me on, but I’d also have flare-ups of both arthritis and suspected fibromyalgia, and was still feeling sick and fatigued all of the time. As anyone with an autoimmune condition will tell you – it is absolutely miserable! Your body is constantly attacking itself, you are catching colds left and right, and spending a whole day laying around is nothing out of the ordinary. Sometimes the fatigue is positively unbearable! So when you DO have days like that, but then you also still try to maintain the life of a “normal” college student, people begin to judge… “She was out last night, but she missed class today!!” – and so the gossip begins. What people do not understand is that with these types of chronic illnesses, you can be 100% fine one day, and feeling like death warmed over the next. Sometimes, it doesn’t even take a whole 24 hours – you may wake up feeling fine, but that evening you may not even feel well enough to join your girlfriends for dinner, or go take a walk with your significant other. Trust me, I caught a lot of flack from a lot of different people through this time – professors, friends and even strangers, I’m sure.

Luckily, I’ve always had a strong sense of who I am – and I tried not to let it get to me – but it hurt, nonetheless. I am now 25 years old and was recently diagnosed with yet another – you guessed it – chronic autoimmune disease. I have an advanced case of Celiac Disease – which may be of the unresponsive or “refractory” nature — which has manifested itself in a few different ways, causing additional diagnoses and multiple complications. I look pretty normal, and TRY my hardest to maintain a normal social life as well as a positive attitude. However, my conditions have affected my work, schooling, social life, self-esteem, and interpersonal relationships, as well. I tend to worry about how others perceive me – even when I should be focusing on my health. Do they think I am being a slacker, lazy, melodramatic, seeking attention, or pity?

Then, the realization simply hit me one day: who cares?? My main priority and main focus should be to recover, rest, heal and get better. I am not going to let any judgmental people stress me out and make me feel bad about an already-bad situation. While being “babied” is no fun, people DO have to realize that sometimes if someone has a disease or disability, certain special accommodations and adjustments may absolutely HAVE to be made to make their life a little more comfortable.

What I do ask in writing this, is for everyone to get past your perceptions of what a sick person should or shouldn’t be, do, look, say or feel.The same illness might affect me far less than someone else who has it, or vice versa. One day I may be a seemingly healthy, happy-go-lucky 25-year-old who is able to maintain a “normal” life – but the next day, I may be worried sick (pardon the pun) because I can’t eat or sleep, my medications may be giving me side effects, and the pain and lack of energy may be too much to bear. I might not be in a good mood, or feel much like talking or hanging out, even when I’m trying to put on a strong, positive, and happy front.

I literally may not be able to physically do the same things you can do, even if it seems to be a simple and mundane task. You should never judge others on any level, and should also keep in mind that some illnesses and disabilities are pretty “well-hidden,” especially for those of us who do try to maintain as “normal” a life as humanly possible.

I like a quote that I came across: “Be kinder than necessary, for everyone you meet is fighting some kind of battle.”

You may never know what excruciating path someone had to take to get to where they are, or what internal struggles they bear each day. So whether it is cancer, depression, or chronic fatigue syndrome; or whether it is a learning disability or another invisible handicap – never judge. Don’t be quick to jump to conclusions, for someone may be having the worst day of his or her life, and facing private battles that you would never see on the surface – whether health-related or otherwise.

I’m done hiding, and so I’m here to advocate for all of us who are dealing with chronic illnesses of the “invisible” nature – for they are more than visible to us!

===========================

The above blog was posted in June of 2009. After about a year of blogging, working with the Arthritis Foundation, and having a known presence in the online arthritis communities, I’d started to get the idea that some people thought that it was somehow “wrong” to portray a positive attitude in dealing with chronic illness, and even heard some people thinking that I didn’t “look” or “seem” sick enough. It bothered me, and, in one of my past Journey to Wellness blogs, I wrote the following response which fits in with the previous blog post, perfectly. See below for an updated addendum:


I’ve had people tell me that “I don’t look sick.” (Which, of course, to me, is a compliment, but, also frustrating, because, I want to tell people to come to the doctor with me, sit through an infusion with me, take a look in my medicine cabinet, spend a week at my house to see how disabled and debilitated I am on certain days, look at my blood work and test results, etc. just to “prove it” to them. That being said YAY, because, OF COURSE no one WANTS to look sick? Right?? I admit, I’m a little vain! So that’s a good thing, I think! ;) )

But back to the topic at hand – well, what DOES sick “LOOK” like? Huh? PLEASE tell me. Is it because I don’t listen to my doctors and I still wear heels? Well, sorry, world, I have a love for fashion and a bad shoe fetish. Have you seen the knee x-rays that I’ve posted on here? That it’s bone-on-bone? That I need a knee replacement at age 26 and that it locks multiple times daily? That my doctor tells me NOT to wear those shoes? Do you know that I walk with a limp, even though I do rock those fabulous shoes? That I have gotten made fun of for how I walk in junior high and high school? And probably still? Do I not look sick because, well, I smile? I have been told that I have a nice smile, and so, I do it? Plus, it is healthy. I post pictures online where I am smiling, happy, and look nice? Is that bad? Should I not, because I am sick?

I mean, to “show” that I am sick, I *could* post photos showing my hand last night, when it was swollen and looked like a deformed potato … but really….who wants to look at that? Or, I could show you my knee, with it’s eternal puffiness, and the scars. I could show you the days where I cannot wash my hair because I cannot lift my arms to do so. Or the days where I physically cannot get out of bed. Or my handicapped parking pass. But no … I don’t. I post pictures out with friends. Pictures from my modeling days. Photos of me at the pool, with my dogs, with my family, doing fun things.

Do you know why? It is because I choose to TRY MY HARDEST to be happy and as “normal” as I possibly can. Some days, I have to just “suck it up” and some days, it is an act because I am so ill and in so much pain. But I choose to try. And I choose to only recognize the good times. Yes, I do write this blog … “the good, the bad, and the ugly.”   But, it isn’t because I LIKE to drone on about “the bad and the ugly.”  It is so that everyone out there dealing with the same struggles can identify and have a place where they can commiserate, and relate. Also, it is a way where I can vent and find support, as well.

Sometimes, I worry, though, that people will judge me for trying to stay strong, stay positive, and life my life in spite of struggling with rheumatoid arthritis, osteoarthritis, celiac disease, adrenal problems, chronic daily migraines, and other random diagnoses (nonstop tinnitus, daily nausea, parathesis, vitamin deficiencies, food intolerances/allergies, environmental allergies, suspected fibromyalgia, and more.)   Sometimes, I feel like people WANT me to “play the victim” more.

However … there’s a flip side to it, and that side “isn’t pretty,” either.

Healthy folks don’t want to come to my pity party. If I AM having a, “woe is me” type day where I am in “complaining” mode and I am feeling more down-in-the-dumps as usual, I feel as though I am being judged for THAT, too. So, if I do talk about my multiple ailments, do say that I am having a rough morning, or that I’m having a rough Methotrexate hangover, or that I’m very sick that day, or post a picture of myself on crutches, I feel like I’m being judged by THEM … or even by my fellow “RA-ers” and chronic disease community for “exploiting the illness” or wanting sympathy.

So, how does one tread that fine line?

It seems as though you can’t win. If you are living with chronic illness, it is like you either have to be a victim or a superhero….you cannot just be a normal person, with good days and bad, and mixed emotions about the whole thing. Even if you choose to be in a “super hero” or “victim” role….someone from the other side is going to judge you, regardless.

But, isn’t it like that with everything in life?

I think so.

Everyone gets judged in some ways, right?

What are your thoughts? Please, leave a comment.

Thanks for reading!

Stay Well,

Ashley Boynes

12 thoughts on “Oldies, but Goodies – “You Don’t Look Sick” – The Face of Invisible Illness … Arthritis Sure Ain’t Pretty! by Ashley Boynes

  1. I am so glad to have had the chance to read this post! It totally resonates with where I am in life! While I am only 28, I have my days where I feel 82 and no one seems to understand! Thank goodness for the internet and the community I have found to know that I don’t have to make this journey with chronic illness alone!

  2. I’ll just chime in even though it’s my wife, Grace, who has the chronic illness, in her case CFIDS, Chronic Fatigue Syndrome & Immune Dysfunction Syndrome. CDC recognizes it, but as you know lots of people including friends, family and colleagues have a harder time getting past preconceived assumptions. Grace definitely doesn’t act the part of ‘woe is her’, but she battles every day and night – and has done so for 20 years – to gain, hold onto, or regain some semblance of sustainable energy and even hope of such. She’s often on the underside of the battle, especially the last long ‘while’, but every day she finds a way to keep her spirits up, even if the energy is days, weeks or months away from showing up, even if it’s just a little energy. I just want to acknowledge her and you and all who have to fight this battle on at least two fronts – in your own bodies and minds and on the outer social front, and I know sometimes it’s hard to know which is the harder one. What I do know, however, is that no one is more admirable than someone grappling with such a struggle, and also no one is more appreciative of a truly good partner or friend – or health practicioner – than someone with a chronic illness. You’re all blessings.

  3. Thank you thank you thank you

    Fibromyalgia and chronic severe migraines here. Sometimes when i get the comment “but you look good” i lean in, touch their arm and say “sweetly,”:

    “Thanks, and we know that’s what really matters, right???….”

    They usually don’t even get it, but it makes me feel better (snark)

  4. Unfortunately I was once one of those people that didn’t understand arthritis and the pain people suffer. Now I know. I developed both diabetes and RA when I was in my mid thirties. I’ve often thought about the ones I ridiculed and if I saw them today would apologize.

    Now that I am in my fifties I recognize the way people at work judge me. I haven’t missed a work day, but on those days when I am moving a little more gingerly I see the funny looks. I don’t hold it against anyone; they simply cannot understand because they’ve never had to feel this and then look in the mirro and still see what appears to be a healthy self. I forgive them.

  5. I get migraines and have periods of deep weariness caused by a mild scoliosis. I’m sure other people have doubted the seriousness of my tiredness — “Are you sick?” — though migraines seem to have gotten more respect over time. But one of the weird things is doubting oneself. “I didn’t do anything that strenuous. Surely I’m not that tired …” Then I have to sleep for fourteen hours and have to have a day doing nothing before my energy comes back. I’ve been at this long enough (I’m 44) that I have a pretty good sense of my body’s rhythms, but I know I haven’t seen my last migraine or last involuntary nap.

  6. One small kindness to my Chronic Fatigue Syndrome is that it waited to poleaxe me until I was almost forty. As a result, I had a full complement of friends and acquaintances who knew the “before” me, and could appreciate the change in my well-being, despite the whole “not looking sick” thing. If this had happened when I was in high school or in college, I can’t even begin to imagine how I would have coped (on the other hand, if it had happened then, I wouldn’t have a mortgage which is two-and-a-half times the size of the monthly Social Security Disability payments it took me three years of unemployed fighting to receive, but that’s a different story).

  7. Most forms of arthritis are chronic diseases, which means they will be with you for the rest of your life. They do not go away and cannot, at this time, be “cured” by a drug or treatment. Chronic diseases differ from acute diseases, such as pneumonia or the flu, which are resolved on their own or are cured by drugs.

  8. Thank you SO MUCH! I was diagnosed with fibromyalgia 6 years ago. I didn’t throw up my hands and stop doing anything. I continued to work in the nursing field. I am 50 y.o and feel lke I’m 150 some days. My ex husband thought I was just looking for drugs when in actuality, I was looking for some relief from the chronic pain. I had a breast reduction because I thought that it might help with the neck and shoulder pain. Didn’t work. I have recently stopped working due to the physical pain and am working through the disability process. But pain is subjective and because of that, I’ve been told that it’s very hard to get disability for fibro. My family is full of autoimmune disease. My sister has celiac, RA, latent lupus. I am a carrier for the celiac. My brother has a clotting disorder. But, “We don’t look sick!” I can no longer vacuum the floors, stand at the stove to prepare meals or do any llifting without back and shoulder pain. I buy microwaveable meals to cook. I’m tired all the time from the stress that causes pain that causes stress and depression. I wiish that some of these people could walk a mile in my shoes for 1 week. Maybe they would realize that I don’t want to feel so cruddy all the time and just because I don’t look sick, doesn’t mean I am not.

  9. Pingback: But you don’t look sick? – A world without Psychology | iPsy

  10. I am so glad I found you! I feel the same way. I have chronic pain. Some days are better than other days, but everyday has pain.

    I love the pictures of you looking good because I look good too! I look fit and healthy. People judge me as lazy because I don’t have a job. My husband wants me home doing everything – like caring for his elderly mother, paying bills, managing our rental property, etc. So I am very busy, but also I can rest when I’m having a bad pain day.

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