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.