“You Don’t Look Sick” — The Face of Invisible Illness – Ashley Boynes, Community Development Director, WPA Chapter

“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 really 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 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 not all will flare at once. Of course, this 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 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 to maintain a normal social life. 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 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 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 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 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!

~ Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Explore posts in the same categories: Arthritis Advocacy, Arthritis Awareness, Arthritis Stories, JRA, Juvenile Arthritis, Uncategorized

Tags: arthritis, Arthritis Foundation, Ashley Boynes, Bell's Palsy, Celiac Disease, chronic disease, chronic illness, disability, discrimination, fibromyalgia, invisible illness, JRA, Juvenile Arthritis, life, rheumatoid arthritis, wellness, Western PA, WPA

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