“You are too young to be that ill! Oh, you are too young to be dealing with that kind of pain.” Why do simple, even well-intentioned words hurt so much?
By Lisa Copen
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 are too young to feel this bad!” or “You are too young to be in that much pain.” 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 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. You are too young to feel like you should be making life-time health-related choices. 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 are 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? 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. 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 his or her self an expert on the medications, 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.
It feels like if you are dealing with this much pain, you are too young to have it–therefore you must be over-stating it (complaining!) 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, “You are too young. . . “
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, “You are 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 is the founder of Rest Ministries and she 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? at the Rest Ministries shop. If you are wondering how to change people’s perception about your illness, and becoming frustrated because you just can’t, this book will lead you through the journey of how to accept this and move on.
Lisa reminds though you are not too young to have an illness, you are also not too young to be used by God, regardless of your physical challenges.
- Related Article: Chronic Illness and the Hurtful Things People Say (chronicillnessarticles.wordpress.com)
Thank you, Lisa, for this post. It helps so much to know someone else knows what it feels like!
Thank you, Lisa. I hope one day to help my family and friends understand what it is like to have an invisible illness. I share these article with them when I can.
Thank you for this article Lisa, I suffer from RSD and fibromyalgia and one of my biggest frustrations is that most of my family don’t understand what an impact these diseases have had on my life. I was supermom and have always pushed my way through any obstacle and now I’ve found something I can’t do that with, a brick wall, and they can’t seem to get it. I get comments like its
I get comments like its all in your head, and if you weren’t taking those strong meds or if you would just push yourself and more than one have gotten angry because I’ve been unable to do things. It helps when someone else understands.
Thank you, Lisa. I once was criticized for wearing tennis shoes when I was attending a days-long conference that involved a LOT of walking because I didn’t look “professional”. I was delighted to find a book at the conference bookstore called “All Ministers Wear Sneakers” and promptly bought it and gave it to the man (also a minister) who had criticized me!
Oh Lisa, I was sooooooo teary reading this!! I am TERRIBLY sorry that you went through such a difficult time with this as a young woman! HUGS! What a difficult journey it is for the young with “invisible” chronic illnesses.
My son was diagnosed with CFS not long after his 17th birthday in 2006. It was DEVASTATING to see my active, athletic, charismatic middle son, with so many leadership skills & social skills, suddenly become desperately ill, bedridden & lethargic! Just as devastating was how difficult it was to see his friendships & social life dissolve around him. If it was that tough on me, as his Mum, I have no idea how difficult it was for him!!!!
Now 6 yrs later it’s no easier seeing him without the social life that should belong to a young & handsome 23 yr old, who has been refined as gold as a person & in his faith, as he’s a “shut in” with CFS, MCS, depression & anxiety!! There are a couple of loyal, loving, caring & faith-filled young guys who visit him occasionally….praise God! We couldn’t have done this journey without our precious Lord Jesus. Lotsoluv Kerryn
I sucks to be young and sick. I wish there was a ton of awareness of young people with chronic pain, I’m 15 with fibromyalgia and joint hypermobility syndrome (jhms). To peers I’m too young to be sick and no one takes jhms seriously. This website is so helpful. It shows me that there is people who were young and had diseases associated with old people.
Oh Brittany…..hugs to you! My heart goes out to you knowing how tough it is for my son.
The positive about being young with fibro is that there’s a chance you may improve dramatically. I personally know 4 young people aged between 10 & 17 who got CFS or fibro & are now in full-time work living a normal life. Two of them had it for 2 years, one for 5 years & one for 9 years. Lotsoluv Kerryn
Lord, please comfort & surround Brittany with Your precious love, grace and peace. I pray that you would guide a couple of young people to want to understand, love & bless Brittany with friendship & company when Brittany can manage it. Bless this young woman with deep insights about You & Your love for her. Thank You Lord. Amen.
Thank you for this . . . The problem with reading this is that you focus on what everyone is saying to you. When, in my situation, I am the one saying it to myself! I have always been a “push through the pain” keep on going kinda girl. And, it almost breaks my spirit to know that this isn’t going to go away it is here to stay. I have been in denial since I was 28 when I was diagnosed with RA, at which point my fiance, at the time, told me he wasn’t sure if he wanted to marry me anymore because he didn’t want to be pushing his wife around in a wheel chair in her twenties. Since, the diagnosis, I have now added degenerative disc disease, sacrolilliac joint dysfunction, and they are starting to think Fibro now! I go to a support group where I am the youngest one there and it’s hard. And, my last doctor sent me to so many doctors, it made me feel like he didn’t even want to help me! I had an injury a year and a half ago in my back and the pain is awful. If I can’t get my husband to help me out of bed, it takes me like 10 minutes to get out of bed because my arms have fallen asleep and I can’t push myself out. I am in constant pain running around a toddler, but still think I’m going to get better.
Thank you for this article!
It’s very heart warming to read this article because those are the same thoughts that go through my head. I’ve had people say to me “well you don’t look like you’re in pain!” Well, of course not, I can’t I have three small children to run after! I have to take something to get rid of the pain so I can go about my day! I never understood “invisible illness” until I was diagnosed with one
Just read what you’ve written Robin. Sooooo fFeeling for you & sending hugs & praying now for you. Lotsoluv Kerryn
Thank you so much for this post. Having an invisible illness its so easy to feel alone because no one around you feels the way you do. I was diagnosed with chronic migraines at 16 and fibromyalgia at 21, along with a slew of other health problems that have plagued me through my life. I gritted my teeth through college as professors rolled their eyes at my absences (the days when the pain and exhaustion was just too much), but now at 24 and out in the world, My health has improved through the right team of doctors, but I still struggle to find the right kind of employment. When the economy is rough and you are living at home, you can’t just go work at the factory or grocery store to get by. And so many people just don’t understand that, that a young person should be healthy enough to do anything. And the frustration and hurt that brings just adds on to the pile of living at home at 24…Its wonderful to hear that I am not alone in the pain.
Thanks Lisa for sharing this…. I can relate as I was diagnosed with 2 chronic conditions on the same day at the age of 25. I’m in my late 30′s now and I still get stupid comments from time to time…. and a lack of understanding of what I’m going through. I also got diagnosed recently with further illnesses, one of them being rare. I guess we can’t expect people to understand. But dealing with it daily is hard work at times…. thankfully we have Jesus on our side.
I should add that the very first comment I got when diagnosed was “you’re too young to get this… but you have it”. I got diagnosed with type 2 diabetes and back then I was too young…. nowdays kids are getting diagnosed with it. I’m now insulin dependant and having a lot of pain everyday with digestive problems.
I can relate so well to this. I was first became ill at age 13. For years I felt guilty for not being able to do things that my peers were doing – just because they thought i should be and couldn’t understand why not. I have learned to be confident in who I am though. I am grateful that my family understand me (they too have health issues) but the in-laws, the sporty in-laws, who think I should just do this or that. I am well over trying to explain myself to them.
What a refreshing read. I have Non tropical Celiac Sprue. I am beyond tired of people comparing it to Lactose intolerance or a peanut allergy. First, it is NOTHING like an allergy at all and that misconception leads to people taking my carefully created food and “sharing” it at parties and functions so I have to go without. Others tell me their dish is likely safe because “they think it will be OK”. Like really, I want to carry some arsnic with me all the time and ask it they still want to drink from their glass not knowing if I put some into the drink as long as I “think it will be safe”.
I am sick of wait staff at resturants putting croutons in my salad despite specifically explaining that these are seriously dangerous to my health, then taking it back to the kitchen to pick out each crouton with their bread crumb covered fingers to present it to me once again as safe and expect me to pay them for their total lack of care.
I am sick of “christians” who honestly think wheat and/or gluten makes them sick who go to resturants ordering in an unsafe fashion!!! Do they ever think beyond themselves? The next person who nearly died from the auto immune condition follows only to be treated like a whiner by the same wait staff who was improperly taught by the earlier christian. What happened to “do unto others”? Does anyone get that we don’t ever affect only ourselves with our decisions?
I heard all the rude comments about being “too young” also. People are so quick to believe it has to be something we are doing when doctors fail to understand or diagnose a very real illness.
One person tried to “exercise” the demon out of me because “it haad to be sin” causing this “fake” illness.
It takes far too much energy to actually explain that many decades of starvation cause actual real uncurable damage!
Add to that the drug addicts (who also think they are harming only themselves) who have caused doctors to fear prescribing beneficial pain relieveing medications provided by God for people who have permanenet tissue damage.
Personally, I think most of the comments about being “too young” OR “I push thru the pain” AND “have you tried xyzs” to be blow off refusals of God calling them to be his compassion in the world. It is way easier to blow others off with a quick comment than it is to try and understand and offer companionship or sympathy.
Of course, I have never found a safe place to actually talk aobut the pain and anger of spending a fortune seeking a diagnosis only to be allowed to starve to the brink of death before any doctor acknowledged that something could actually be wrong with my body instead of my mental health.
Where does one go to find a real compassionate listener who is not going to negate the built up emotions with things like “they did the best they could” AND “if you were a real christian, you would not be angry. You would just trust god in all things.” IT is as if we are not allowed to experience the very real grief from these life changing events. One can trust God and still be angry that dozens of doctors just blew us off while we were literally dying right in front of them.
WOW! Susan you’ve had such a tough journey. Thank you for sharing your heart, soul & faith here, where it IS safe. Praise God for RM!
My experience is that there are few “compassionate listeners” out in the real world. Sadly I fail often too, even with my son, when I should know better ‘cos he has what I have! Thankfully there are MANY compassionate listeners on RM & in the Sunroom. I pray that you will feel heard here. Bless you. Lotsoluv Kerryn