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You're too Young to Be That Sick, and Other Misconceptions About Invisible Illness

  [ 44 votes ]   [ 4 Comments ]
By Lisa J Copen • www.ProHealth.com • June 27, 2012


Lisa Copen is founder and director of RestMinistries.com, a nonprofit dedicated to practical and spiritual encouragement of persons coping with chronic illness or pain. Lisa, who lives with rheumatoid arthritis and fibromyalgia*, pursues this mission with the help of many dedicated volunteers. This article is reproduced with kind permission from RestMinistries.com.©Rest Ministries, Inc. 2012. All Rights Reserved.

__________________________

"You are Too Young to Be That Sick!" Invisible Illness Challenges

At the age of twenty-four, a thousand miles away from my family and 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 of internal medicine who listened to me explain my symptoms; 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 in the office any longer, making me appear less professional.

People offered their opinions

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 fatigue and pain to their sports injuries. “Yeah, I have some arthritis in my knee from softball. 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.

Facing the new realities of illness

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 are 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.

How their comments felt

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 hit my heart deep anyway.

Did they assume that I was ignorant or that I too easily accepted the doctor’s diagnosis? Their 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.”

What to do with these feelings

Understand that feeling criticized, judged, put down – all of these are normal responses to the comments about, “You are too young to have (fill in the blank with your illness here). But don’t allow those emotions to simmer and put you on the defensive. Your number one priority needs to be taking care of yourself.

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. [See Lisa’s review of the book <a href="http://illnessbooks.com/Life-Disrupted-Getting-Real-About-Chronic-Illness-in-Your-Twent-p107.html" target="_blank">here</a>.] 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.”

Practice letting the remarks slide off you. It takes time, but come up with your own prayer or response in your head to repeat when you hear someone say something ignorant.

Why do people have these misconceptions about illness?

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 them, 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.

And rarely do these advertisements show people in their twenties or thirties. It is still men and women in their late forties to sixties who are now glad that they can play a round of golf without too much pain.

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.

Coping with the comments

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.

The most important thing is for you to take good care of yourself. Your health – or illness management – is the number one priority. Find an understanding friend (an online support network is a good idea) so you have someone to vent to who understands.

Offer awareness tips

Lastly, use these remarks as a moment to kindly offer education to those who offer their opinion about your age and illness. I remember telling people, when they told me I was “too young to have arthritis” - “Actually, most women are in their twenties and thirties when diagnosed with rheumatoid arthritis. It is an autoimmune disease, so a lot different than typical arthritis you may be familiar with.” Little by little, you may help increase their awareness and this will help others in the future.

- Lisa Copen
_____

* Lisa Copen is the founder of Rest Ministries, which serves people who live with chronic illness or pain through daily devotionals, articles, and much more. Lisa lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why at the Rest Ministries shop.




Join the Discussion Post a Comment 


Coping with the comments
Posted by: jhampton
Jun 27, 2012
I've had to deal with this situation for many years. I became ill in my 40's. I was first diagnosed with Lupus, then a Connective Tissue Disease (auto immune disease), CFS, Systemic Fibromyalgia, Chronic Pain, and many other health problems that are associated. I felt (still suffer) so horrible and struggled to work for 5 years with my illness. Because I could no longer function in my job I had to file for disability when I was 48 or 49. Even at my age, I have had to deal with the same cruel comments. Because people can't "see" your illness they don't think you are ill. Unless you have cancer, a terminal illness, a broken arm or leg, something they can actually see, they think it's all in your head. Their comments are cruel and they haven't a clue what you're dealing with. I don't leave my house much except for my doctor appointments and then to do a few errands. I will not go out in public looking the way I do at home. Therefore, people think you look "fine"...you don't look ill! If our critics could see the way we look while at home maybe they wouldn't be so quick to judge. I'm rarely able to get up and get dressed before 12:00. I have to make all my doctor appointments for late afternoon... after 2:00 p.m. because I don't function in the mornings due to the Chronic Pain and Fatigue. Finally, I got sick of hearing the comments, so, I started printing out all sorts of articles on my illnesses so I could hand them out to my family and friends. People don't understand that you have an illness unless they can "SEE" it. I'm not sure they read the information because I "STILL" get the ridiculous comments..."You're Too Young To Feel So Bad". Even my doctor makes this comment!!! My husband doesn't fully understand, and my family and friends think if I take "KRILL OIL" or stop my medications, I will get better! I've tried it....I've tried everything....it doesn't work! It's all so frustrating! Yes, yessss....I know I shouldn't be in so much pain and feel soooo bad at my age......but, I AM! I'm totally convinced....that if I wouldn't comb my hair, or, put on any makeup, and, wear my robe to town, that maybe people would FINALLY....GET IT!

This article says...find someone to talk to...like a support group. Well, I've tried to talk to my family and friends. They still don't fully understand. Finally, I found someone....a good Therapist. At least I have someone who will listen and who tries to help me.

Thank you ProHealth! This is a great article...THANK YOU!

Signed...Too Young To Feel This Way...But I Do

Reply Reply

I understand that the ones closest to you can hurt you the most
Posted by: mickey777
Jun 27, 2012
I have been sick with ME/CFS and Fibromyalgia since I was 25 years old. I have been ill for the past 18 years. I completely feel for,and understand how everyone affected with these so called invisible illness is treated by friends and family. You would think that family would love you even when you can no longer do things with them, or for them. Unfortunately as we have all found out not only have they not helped us, their comments,and lack of understanding have made it even harder for us to cope with these horrible diseases. I have spend all these years trying to help my family to understand to no avail. I have come to the conclusion that we should just stay away as much as possible from everyone who doesn't get it,because it gives us a lot of stress,and increases our pain.
I am not telling anyone to do what I have done,but just sharing so please don't get offended in any way. I have decided to lean on God,talk to him,read my bible,and talk to other people who have our illness. I'm actually a messianic jew,in case anyone was wondering. I think seeing a therapist is great,just stay away from anyone who gives you stress,and try and I know its hard not to care what family friends or anyone thinks. If you need to vent,then vent to God or people who have this because we understand. I believe that we are just passing through this life,and our rewards are in heaven,nothing here is forever.
Reply Reply

Very Validating
Posted by: country125
Jul 13, 2012
Lisa has done an outstanding job at reminding us as fibromyalgia sufferers that we must above all else place our needs first. This is not a selfish thing to do, but an empowering one. Only when we are as well and strong as possible can we maintain the resilience needed to appreciate life.

I had have fibromyalgia for 15 years and was diagnosed at age 30. I have lived much of what Lisa recounts and am a big fan of anything that promotes resilience and personal power. Thanks Lisa!

Gary Cote
www.betterfibromyalgialiving.com
Reply Reply

Great Article
Posted by: storiessave
Aug 5, 2012
This article really hit home for me. I'm so happy when I see others that have felt the way I've felt for years.

I became sick when I was 15. I caught a virus that my body simply never recovered from, and after 6 months of endless tests and doctor visits, I was diagnosed with Fibromyalgia and CFS.

I spent over a year recuperating at home, trying various treatments, and slowly building up enough strength to get out of the house for a few hours at a time. From there, I kept working at it and finding tricks that worked for me. Every now and then, I can hit a total remission. No pain, no sadness, no crippling fatigue...but in the blink of an eye, I can relapse without warning, and be back where I started, unable to get out of bed. It's a constant struggle.

I have watched friends live normal lives, party, do what teenagers and young adults do. I've watched my life pass by and felt totally powerless because my own body holds me captive. I'm now 22 years old, and still struggling.

I've been given the "you're too young for this" speech all too many times by now, even by doctors. People seem to take one of two lines of thinking when they're confronted with a young adult with a chronic illness -- either their every action or word is lined with pity, or they see you as less of a person, an unworthy person, if you can't push through and keep up with healthy people. And then there was the skepticism -- the notion that, since invisible diseases are, in fact, invisible to an outside eye, they aren't serious and debilitating conditions.

It's definitely a day to day struggle, living the life of a 60 year old woman at a nice old age of 22. It's not fair, what happens to us, but it did happen. I've accepted it, and that I will never be able to do the things I loved doing as a young teenager, but I still get sad sometimes thinking about how things would have been without the disease.

We are survivors of diseases that changed how we live for the rest of our lives. I applaud every young person that conquers these diseases, or even just finds a way to deal with them. It is no easy task, and it's definitely a road paved with disbelief and shallow remarks.
Reply Reply


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