Living (Well!) With Illness
I’m 25 years old and I have health conditions. I was recently
diagnosed with Celiac Disease, even though the ‘average’ onset of CD
is more commonly diagnosed in women over the age of 40. Symptoms of
Rheumatoid Arthritis typically begin after the age of 40; I was
diagnosed with Juvenile Rheumatoid Arthritis, or JRA, at age 11. This
blog is about my personal struggles. Living with invisible autoimmune
conditions can be discouraging at times – but you don’t have to go
through it alone. Here, I will share my personal stories and thoughts,
as well as news on medical breakthroughs and ways to live well while
coping with illness. I’m also here to encourage dialogue about living
a happy, normal life – despite feeling sick at times. Like I said, I’m
25 years old and have health conditions. But they don’t have me.
Living (Well!) With Illness | 06/19/2009 9:40 am
The Face of Invisible Illness
"You don’t look sick." Sure, to hear those words is a relief and a compliment. But for those of us dealing with chronic "invisible" illnesses, it can be very frustrating.
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 in high school. When I was about 11 years old, I was diagnosed with polyarticular JRA – Juvenile Rheumatoid Arthritis. 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 treated 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.
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, I came back – but still was not quite myself. I’d have flare-ups of both arthritis and 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. So when you do have days like that but you 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. 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 has manifested itself in a few different ways, causing multiple diagnoses and complications. I look pretty normal, and try to maintain a normal social life. However, my conditions have affected my job, schooling and social life, 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.
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 in high school. When I was about 11 years old, I was diagnosed with polyarticular JRA – Juvenile Rheumatoid Arthritis. 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 treated 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.
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, I came back – but still was not quite myself. I’d have flare-ups of both arthritis and 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. So when you do have days like that but you 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. 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 has manifested itself in a few different ways, causing multiple diagnoses and complications. I look pretty normal, and try to maintain a normal social life. However, my conditions have affected my job, schooling and social life, 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.
Read more about: Ashley Boynes, blogs, Celiac Disease, Health, Human Interest, Illness, Living Well With Illness, Relationships, Rheumatoid Arthritis
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22 Reader Comments (so far…) Sign In or Register to comment
Is that lovely young lady’s name ‘Ashley’? Ash, my favorite hockey player growing up in the early 1970’s was Mickey Redmond of the Detroit Red Wings. He was the first Wing to score 50 goals in a season, and he did it twice. For the past 20 years, he has been an extremely popular color commentator for Red Wings games on TV. Like you, he has Celiac Disease. It’s the main reason he doesn’t broadcast on very many of the road games - he has to prepare his own gluten-free meals.
You’re right about people making assumptions, asking insipid questions, and making ridiculous statements like the one you cited: "You look healthy." Good luck to you.
I am right there with you honey. A work injury 20 some years ago left me the same on the outside; but, suffering with chronic pain ever since. Years later I was diagnosed with severe fibromyalgia, severe chronic fatigue syndrome and chronic back pain due to a car wreck several years before the work injury. Worse being a single parent the injuy knocked me out of the work force so I was forced to turn to government assistence to keep my family together. People seem to think that you do not have the ‘right’ to be ‘invisibly disabled’ if it means getting ‘assistance’ to survive. They do not understand and think that I am faking if they do not see me leaning heavily on my cane with my face constantly contorted in a grimice of pain. I want to be happy. I do not focus on the pain. I want to live as best I can. They do not realize that my legs one second fine the next can be screaming with pain and buckle out from under me. I took several bad falls beforeI finally conceded years later than I should have in getting a cane. It was too embarrassing to me to be puplically seen with it. I did not even want my children to see me that way. People can be very cruel when you do not fit the image they want you to fit. I am a very intelligent and intelectual person. I am also very talented and gifted in art, photography and poetry. It has been hard not having friends of my intellectual calibur to converse with for over 20 years due to the stereotuype, that poor in wallet means poor in intelligence. People also judge according to ‘give statistics’. Ihey think I should feel they way some ‘expert’ says I ought to feel. They think that pain can not come and go numerous times throughtout a day. They do not even understand how I can swell and unswell numerous times throughout the day. How can shoe and ring sizes change so often. They think it is not possible so they deny the very thing they can see.
I also understand the learning disability. My youngest daughter though well above average IQ has dyslexia and ADD. She was treated as a problem child in her school. To ‘motivate’ her to do better they shamed her, put her in detention several times a week, refused to let her perform with her swing chior’s public performances ( This class was co-curricular not extra-curricular so how they could deny her the public practice I do not know. It was just too much embarrassment for her to explain to her classmates why their choreography was completely messed up by her no-show at an event. She started cutting school for the first time in her life. And for the first time ever I had a reason not to be angry with my child for cutting. Her dreams of becoming a dancer were smashed. Now she will not even discuss it without flying into a rage and vehemently denies having wanted to dance, own her own dance shool and teach it.). and scrutinized her every move or non-movement. I finally had to pull her out and put her in an alternative school. Unfortunately I did not do it soon enough. She became a cutter and absolutely refuses to acknowledge that she is dyslexic. And why should she her own school said right in front of her that they did not beleive in dyslexia. She dropped out of the alternative school; but, then decided not to be held back and got her GED. Now she is studying welding in Job Corps.
I too am done hiding. People can think what they want. If they are not wise enough to get to know me instead of judging my empty wallet, Welfare stigma and invisible disability, then they are not worthy of my friendship anyway. I am a rich woman. I am rich in smiles, compliments, kindness, love, compassion and generousity. I have plenty of treasures to share with those smart enough to SEE.
Ashley, I hope you begin to feel better soon, You are a beautiful young lady who apparently has a gift for writing. Focus on the positive and to the losers that judge you , dont worry about it, its not worth it to waste the energy.
There are thousands of people out there whose illness is not visible. I wish people would become more sensitive and compasionate to all of mankind.
To Ashley and all the people who wrote in regarding their medical issues that are veiled to others: more power to all of you for pushing on. I have autoimmune arthritis - in fact I have 3 different types. I also have a slew of other autoimmune disorders; I do not have IBS. At one time I had something like 26 ICD-9 codes. I have an arsenal of drugs that would make a 90 year-old gasp. Some are to control the diseases and probably two thirds are to get rid of the side effects the other pills cause.
Do I look sick. Not a bit. I’ve had to limit social contact over the years because I’m a germ magnet. In spite of great pain in many joints I flat out refuse drugs that will alter my level of awareness. And in spite of the chronic pain and inflammation I walk at least 1.7 miles a day in 25 minutes. Moving is key for me. Use it or lose it.
The good part is that unlike Ashley, I was in perfect health until I turned 40. I never feel sorry for myself and have never been depressed. I’ve learned to treat the ups and downs and annoyances.
Staunch and brave, you say? Hell no. I’ve got a half brother, younger than me, who has Cerebral Palsy. He can’t walk, is paralyzed on one side, has seizures, and has the IQ of a 3 year old. My problems can’t even begin to compare with his.
I too am sick of these same old words….it gets tiring hearing that I don’t look sick. My secret has always been….put on a happy face….smile to the world…..life will be easier.
Peace and goodwill to you and may you always have the strength to smile to the outside and inner peace to cope with life.
"look sick" you don’t act sick….I don’t let it get me down. It doesn’t do anyone any good if you mope about it. A positive attitude has helped me get this far in life, and has helped me accomplish more than any medical personnel thought i would, and keepe everyone on their toes around me.
James,
Thanks, but I don’t see it as courageous at all. I just see it as something I need to do in order to help prevent further degeneration. Kind of like brushing your teeth.
Don’t know if these help:
30 Cases Reversing Irreversible DVD by Valya Boutenko of the Raw Family Boutenkos.
Ann NO SLEEP Wigmore Asst 20 years freeEbook for what Ann actuallyATE&DID-daily wheatgrass enemas she didn’t actually drink it. http://bit.ly/oTNtQ - Helped conditions of many people. Amazing. xxx