When you live with chronic illness, especially as a young person, you hear some crazy comments. If I had a dollar for every time I heard “but you don’t look sick,” I would be living on a luxury island! When I discovered The Spoon Theory and the website ButYouDontLookSick.com, I wanted to hug my computer. Finally, someone completely gets it! And don’t get me started on all of the miracle “cures” that fixed so-and-so’s brother’s girlfriend’s second cousin twice removed. I wish there was a manual available on how to support a friend with chronic illness that you can pass out to friends and loved ones when you are diagnosed.
One of the most difficult comments I have had to battle was that I was too young to be sick. I was first diagnosed with endometriosis at 22 and I know that far younger ladies struggle with the disease than I. Unfortunately, endometriosis (as well as other chronic illnesses) do not know boundaries such as age, race, or economic status. I wish I was “too young.” I hate that I had to make the choice to have a hysterectomy at 26. Or had the need to see a pain specialist before the age of 30. Or would be filing for disability at the age of 31. The reality of my pain and illness is not proportional to my age.
The other challenging comment is that I should be thankful that my illness is not fatal. Let me start by saying that I thank God each and every day that I do not have cancer or another possibly terminal illness. I am incredibly thankful for that but the fact that I’m not terminal does not make my pain any less real. It doesn’t make living with crushing fatigue and pain any easier. The physical, mental, emotional, and spiritual burden of living with chronic illness day in and day out is extremely taxing and I think something that any person living with illness wishes that others would recognize. We wish for validation and affirmation that our pain is real. Quality of life is just as valuable as quantity of life and as someone who has struggled to maintain a measurable quality of life outside of illness, it can be difficult to maintain hope and a positive outlook when there does not seem to be an end of the pain or illness in sight.
If you are looking for tips on how to support a friend with chronic illness, let me share the two most powerful things you can say to him or her:
1- I’m sorry that you are hurting. Period. Don’t offer advice or a miracle cure. Don’t try to fix them. Offer validation and affirmation that you recognize their pain and illness is real and that you are truly sorry that they are having to experience it.
2- How can I pray for you. Better yet, pray with them right in that moment. I am totally guilty of saying that I will pray for someone and then life gets in the way and I forget. I’m not proud of it but it happens. Some of the most powerful moments I have had is when someone has offered to pray with me on the spot. I had a coworker even pray with me over the phone at work and I cannot tell you the difference it made in my day. If you are looking for a more physical way to help, offer to help a friend in specific ways versus asking a general “how can I help?” When living with illness, it can be hard to admit you need help but it would be easier to accept help if someone said, “How about I come over and help work in your yard this week?” instead of “What can I do for you this week?” Lisa Copen of Rest Ministries has a great book called Beyond Casseroles: 505 Ways to Encourage A Chronically Ill Friend which offers some creative ways and helpful tips to support someone with chronic illness.
Thanks for your comments about your age. You are about 1.5 years older than me, which is a big reason why I read your blog–someone else understands being in chronic, debilitating pain AND in your 20s all at the same time! We get it sometimes with our adoption process too–people think we’re too young to be infertile and doctors wonder why I’m not wanting to try longer. But you can and do have “stuff” at any age, and I thank you for providing a place to validate that.
I am so glad you were able to find some validation! We got that comment a lot with our infertility as well! Isn’t it supposed to be *easier* to create a family when you are young?? Its hard and frustrating at any age and I wish more people recognized that! I wish you the best of luck on your adoption process! It is such a roller coaster but so worth it in the end!
“You don’t interact like a pain patient.”
(after telling a new doc about the lack of libido on CBCPs) “And he STILL married you?”
(after talking wih someon about non-health mtters) “At least you have your health!”
(when i lost a few lbs at the start of the mes despite eating tons of junk food) “I wish I could get that disease”
When I was admitted to the hospital last summer with the bowel obstruction the nurse told me that I looked too calm to be in so much pain. I asked her if it would help the situation if I would curl up in the fetal position crying hysterically (like I was feeling on the inside). I think she understood. I’m still reeling from the “and he still married you” comment. I mean, really? From a physician?
“but you look so good, you can`t be sick” – just because I put on makeup, brush my hair and dress nicely while I put on my warface (everyday-smile to hide my pain) doesn`t mean I`m automatically healthy.
the best would be: “you`re the strongest person I know” – that one meant so much to me!
My last day of work before medical leave I had someone tell me that I looked wonderful so there was no way I could really be sick. I just told her that I was an amazing actress and makeup performs miracles! I knew this person pretty well so I felt ok about dishing the sarcasm but seriously who wants to look the way they feel?
So annoying to be judged for making ourselves look better than we feel. I guarantee if we didn’t hide it, and looked like death all the time, then we’d get comments about not trying to at least look good!
i had someone tell me to pray a verse out of Ezekiel over my hemophilliac husband next time he starts to bleed. can God work miracles? sure, but this is something to serious to leave to old wives tales your great grandmama told you
I am all about the power of prayer and that God can perform miracles but I think sometimes when someone makes a comment like that its like they are saying that if you had enough faith, you or your spouse or loved one would not be ill. I hate the assumption that if I just prayed harder that I would be healed. Its like telling someone going through infertility to just relax and they will get pregnant.
Jamie….when it’s not 3am and I need to go to sleep…I will have to message you a personal story about that!
Perfect post Jamie!
Currently I’m dealing with the comments “well how can you go out of town being so sick?”
HELLO I live with chronic illness everyday. Yes I’m having a flare. But I have to keep living life. If it is at all possible to continue my previous plans I will. I can lay in a hotel bed just like I can lay at home. At least I can try to enjoy my destination and just be “away” for a bit.
So tired of being judges for living life, AND for not being able to live life. People who don’t “get it” judge you no matter what. I’m SO over it!
Sorry for the long comment. Lol
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i have a chronic condition that causes tumors to grow in different parts of my body- the comment that I got that made me absolutely furious was that I should try essential oils to shrink my tumors. Oils? Really? That’s like a slap in the face. Basically telling me that all of my suffering and treatments and surgeries were a waste of time because oils could have fixed me. How ridiculous.
What I wouldn’t give to not have gotten sick until my 20’s… I was diagnosed with MCTD when I was 13, now am 14. My pet peeve is when people say, “But you don’t LOOK sick!!!”
It’s really hard, I was young too when it started,lost half my left breast when I was 19 years old and by 20years old my pain was getting worse so by 22 I was back in the hospital and had emergency surgery a colostomy, I didn’t know what it was till I had it, that didn’t work so I had to get my large bowel removed. It died inside me , because I was so young they offered me an ileoanalpouch & for 22 years I have had it but I still had loads of pain & had to get an ileostomy out a few times because of the pain etc ,eventually on November last year I got the ileostomy out full time.i have had surgery since but I’m now 46 and feel 76 because I have a lot of illnesses that pull me down , love&hugs for you all xxx
Elizabeth, thank you for leaving a comment! I apologize that it has taken me so long to respond. I have been pretty much out of commission since Christmas and I’m tired of it. I’m ready to get back on the horse and ride until I fall off or find a doctor that will actually do something. Like myself, you went through a lot at a really young age and it is so hard to get others to understand. If I had a dollar for everything I heard, “You’re too young to know anything about that,” I would be a millionaire. Especially when it comes to hot flashes. I always get the side evil eye from the blue hairs. When I go to see my rheumatologist or my pain specialist, I am easily the youngest there by 30 years if not more. My rheumatologist once called me his star patient and I just wanted to tell him, “That’s because I’m the only one you are not worried about coding on your table.” If you ever want to chat, please let me know. You can drop me an email and I can even give you my number and we can text during the bad days if that would help. Anything that I can do to help you get though this, I will do. Love & gentle hugs, Jamee
[…] 10) Things To Say (& Not Say) To Someone With Chronic Illness […]