Chronic Illness Articles

July 16, 2009

You are Too Young to Be That Sick!

Typisches Röntgenbild einer Rheumatoiden Arthr...
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At the age of twenty-four, a thousand miles away from my family, living in a new city, I was diagnosed with rheumatoid arthritis. Over a period of four weeks and about eight doctor’s visits, I finally found a physician who listened to me explain my symptoms and in less than two days I had a diagnosis.

Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain. Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional.

They quickly threw comments about such as “You’re too young to feel this bad!” Most people were confused about the difference between rheumatoid arthritis and typical degenerative arthritis that our grandparents may suffer from. They ignorantly said things like, “There is no way that you can have arthritis yet.” Those that did try to offer sympathy compared my fatigued and pain to their sports injuries. “Yeah, I have some arthritis in my knee from football. You just have to keep pushing through the pain.” It wasn’t unusual to see their comments accompanied by the wave of their hand or their rolling eyes.

When you are faced with a chronic illness in your twenties, all of the typical decisions you should be making are quickly put on hold. Up until now, you were considering what kind of education to pursue, your career aspirations, relationships, and even where you will live. All these are put aside, however, as you are forced to make immediate decisions that impact the rest of your life. Things like how well you accept (or do not) accept the diagnosis of your condition, which medications to try, when side effects are worth the risk and when they are not, and how to find the right physician. While friends are deciding which party to go to we’re at home trying to make sense out of our latest lab test results, weighing our options for alternative treatments, and deciding to have a good cry or just go to bed and hold back the tears one more night.

I did my best to make well thought out decisions, each of them based on thorough research, some instinct, and of course, “worse case scenario” situations. So when I heard someone flippantly tell me, “You’re too young to be diagnosed with that illness” it felt like a slap to my intelligence. I recognized it as a passing ignorant comment, but it it my heart deep anyway. Did they assume that I was ignorant or that I too easily accepted the doctor’s diagnosis? They comments implied that I wasn’t being assertive enough and that I needed to go back to the doctor to get the “real” diagnosis (of an illness that could be cured in a few weeks with just a pill.) I couldn’t really be that sick, after all, because I “looked so good.”

Laurie Edwards, a woman who grew up with a chronic illness as a child is the author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,’ In her book she explains, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy – fear, ignorance, intolerance, to name some.”

The saturation of advertisements on television and in magazine for prescription medications has helped legitimize some illness, such as rheumatoid arthritis and fibromyalgia. There are downsides, however. For example, everyone considers her self an expert on the, plus they make their assumptions about how well the drugs work based on the ads. The advertisements show people with debilitating illnesses (healthy models, actually) who are astonishingly now able to water ski or join their kids on 300-foot water slides. While a certain percentage of people may experience remission, the majority of us are happy to be able to get up out of bed without assistance, get dressed, and drive to the grocery store. Ads and commercials fail to alert people that though an illness may be temporarily controlled, they are usually associated with immense daily chronic pain.

With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition. When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.

Instant download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you signup for HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of Invisible Illness Awareness

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  1. YES! Everything you said I can relate to; I can’t count the number of times I have heard, “You’re too young for this,” even from doctors. I appreciate the media’s attempt to educate the public and it has helped, but I almost want to laugh when people ask if I have tried Lyrica and Cymbalta for my fibromyalgia. Uh, yeah, 3 and 4 years respectively! And then there is the awkward silence following the reply, “Oh.” It can be so frustrating and you described the situation perfectly – thank you. I am actually looking forward to reading Laurie Edwards book, when I heard about it I immediately bought it. Thank you for speaking up for us!

    Comment by C. Cheatham — July 20, 2009 @ 2:59 pm | Reply

  2. I definately can relate to this article, thanks! I have been getting told “you look really good” a lot lately, and I can’t quite decide whether it’s meant as a compliment or as a “well, you don’t LOOK sick, so you must really be fine.” It doesn’t help that I also look 16 (I’m in my mid twenties). Thanks for the reminder that we can’t let them (or the doctors that say the same thing) define and validate our illnesses.

    Comment by Amy Michelle Wiley — July 23, 2009 @ 7:00 am | Reply

  3. […] the article now:   You are Too Young to Be That Sick! by Lisa Copen. Filed under: Inspiration, Life No […]

    Pingback by My Diabetic Heart » Blog Archive » Someone Understands — September 24, 2009 @ 2:28 am | Reply

  4. I know you posted this quite a while ago, but I wanted to comment on one thing you briefly hit on. When we are diagnosed in our 20s, people don’t understand how much of an impact it does have on planning the rest of our lives. My entire youth, I planned to work as a teacher and have children, with whom I did want to stay home. A year after I married my husband, I had my 3rd back surgery for my severe scoliosis, spinal stenosis, spinal arthritis, and degenerative disk disease. Subsequently, I have had 2 more surgeries (I am fused from just below my neck to my tailbone with 3 different kinds of metal rods). I am presently 29. My first surgery was when I was 11. However, when I was 13, I was told I would no doubt be able to live a perfectly normal life. Now, after once breaking rods without doing anything wrong, I am very scared to have children, plus I would have to stop medications in order to do so. I cannot function without these medications, as I live with severe pain. It is also very hard to relate to people my age who are in the “baby” stage of their lives when I am in the “survive every day” stage. When people are diagnosed later in life, they often had the chance to have families, etc. It is heartbreaking to have to let go of a lifelong dream of my own children, let alone the job I loved. I think this tragedy escapes most people because, as you said, we look fine. Thank you for your article. I am trusting that God knows what is best for me and will give me the strength I need.

    Comment by Jessica Barefoot — October 26, 2009 @ 4:31 pm | Reply

  5. I was diagnosed with fibomyalgia and I really dont think it is that.
    I get swelling in my fingers and ankles and it’s like i get flare ups because in the area it turns red and hot.
    Sometimes it itches in the area with pain.
    How can I find out for sure or is these regular symptoms of fybomyalgia?

    Comment by Lareashia — November 9, 2009 @ 1:10 am | Reply

  6. I, too, was told I was “too young” to have RA when I was diagnosed at 21, but it took over a year and an explosion of RA to every joint in my body before a doctor paid attention to what I was saying, to admit it wasn’t just in my head–why in the world would I wish something like RA? That was 25 years ago, and while the RA has progressed, slowed me down, and deformed my joints, by God’s grace he enables me to do what he wants me to do–teach 5th and 6th grade. including playing the piano in chapel & in nursing homes when I take my class to sing for them.

    Comment by Jean Burns — November 22, 2009 @ 11:42 pm | Reply

  7. My mom had one of the most severe cases of RA ever diagnosed in the entire country and it started when she was in her teens/20’s. She couldn’t even kneel down at the cross when she was getting married.

    She was completely crippled and bedridden from my birth to her death at age 50-(I was 17) My father decided to take a mistress and flaunt her in front of my dying mother during their 6 year divorce/custody battle. She got the ultimate revenge and died the day the judge decided to place her in a nursing home (thanks to my dad and his mistress/now wife) During this entire time, my mother never ever complained about any pain or illness and was the strongest, most incredible person I have ever known -or will ever know. She never let this disease or anyones actions make her bitter. She had a great strength and received much of this strength through God. So whenever you think things are really really bad.- think of my mom and the agony she had to endure and how she got through it all with the love of her family and friends.

    Don’t let anyone or anything ever get you down!!

    God Bless

    Comment by halos — December 10, 2009 @ 10:16 pm | Reply

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