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.
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 I could offer two things to say to someone with illness when you would like to offer support, it would be these two comments:
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 to encourage friends and loved ones with illness.
If you have a chronic illness, what is the worst (or craziest) comment you have ever heard regarding your illness? What is the kindest/best comment you have ever received?