One Phrase Not to Say to People With Chronic Illnesses
“It could be worse.”
If I could physically harm words or phrases, this particular one would be lying under some soil by now. Any version of it has been known to put me into a tailspin of emotions which I will never actually allow to show to whomever may have uttered the dreaded words to me.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
In many cases, people are just saying this to try to make us realize that whatever we may be dealing with at the time can be considered to be “small potatoes” compared to issues that other people may be struggling with. I understand that, and I can even appreciate that you may be coming from a good place with it. But I kindly request from this point on that if it crosses your mind to use this phrase to lift someone’s spirit, stuff it away in your mind and let it die there.
Working as an RN for nearly 10 years now, and being born into a family full of medical professionals, I’ve heard and seen horror stories. I’ve managed the care of the newborn without a brain until she passed away, assisted in completing many a death certificates, worked with the cancer patient in pain, the addict who struggled to stay clean and the elderly patient with dementia. I’ve seen more than my share to make me thankful for all that I do have.
Living in Boston, we are lucky to have access to world renowned hospitals and research centers. We can try treatments and educations that are not available or even heard of in other parts of the country. I know that I have a great family and incredible friends who, for the most part, support and understand that I have my limitations and pain issues.
Knowing all of this does not change the fact that I will have my moments and days when I feel like it’s all very unfair. I have two sisters, and I’m the only one that inherited Ehlers-Danlos Syndrome. I have to wake up at 5 a.m. to get to physical therapy by 6:45 a.m. because it’s the earliest they have available, and I need to be to work by 9 a.m. It’s the only time I can fit it into my schedule. I’m tired, I’m hurting all the time, and I’m sick of spending all of my money on prescriptions and co-pays. I consistently have to cancel plans because I can’t sit up or stand up for the whole night. I have to curl into the fetal position for a whole week out of the month because of debilitating pelvic pain. I’m allowed to feel this way. Do not tell me, when I’m having these moments, that it could be worse.
When people with chronic illnesses are having their most depressing days, or most painful days, we need support. We may just need to vent about it, or complain about everything we’re dealing with. Listen, you don’t always need to say something back, or have advice or witty responses ready for us.
When I’m working, I allow my patients who have a chronic illness the time to express how they’re feeling. Sometimes it may include actual profanity, like the 34-year-old type 2 diabetic who struggles with having a chronic illness that requires so many medications and so much monitoring at such a young age. Allowing her to tell me that, “It **** sucks,” opened great lines of communication with her.
When I am told that, “It could be worse,” I feel invalidated.
It shuts me down completely and I no longer want to express or share anything. Yes, I know it could be worse, but my reality in this moment is really unpleasant. Allow us to feel that, and don’t tell us that we could be worse.
Thinkstock Image By: VladimirFLoyd
Caitlin Martin, was born and raised in Boston, Mass. She was diagnosed at 2 years old with Ehlers-Danlos syndrome and works full time as a registered nurse in a primary care community health clinic. Despite health setbacks over the years, and those on a daily basis, she continues to push herself to remain a full-time employee while also studying for her master’s degree as a Nurse Practitioner. Loving and supportive family and friends are her strongest supports which allow her to succeed. Suffering from multiple genetic disorders and chronic illnesses, while being an RN, she sees the medical world from both sides of the hospital bed.
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