What Not To Say To Someone With Chronic Illness

What Not To Say To Someone With Chronic Illness


Biggest Pet Peeves Of People With Chronic Illness


Something interesting happens when you are diagnosed with a chronic illness, regardless of the disease or condition. Somehow, certain people in your life become medical experts. Fortunately for me, I come from a big, tight-knit family so I’m used to getting unsolicited advice on private aspects of my life.


While the unsolicited advice doesn’t really bother me since I know it comes from a place of love, in many of the online forums for people with chronic illness that I follow, receiving unsolicited medical advice is their biggest pet peeve. While it usually comes from a place of love, it can make the person with a chronic illness feel judged. It makes them feel like the person thinks their condition is their fault, or maybe they aren’t trying hard enough or they don’t have the right mindset.


What people don’t understand is that when you live with a chronic illness, especially if you’ve lived with it for a few years, you’ve probably tried your share of alternative treatments. You also likely have more than one medical doctor with expertise on your condition treating you. You probably also have tried your share of medications to keep your condition under control. You work harder than a healthy person just to perform normal activities of daily living.


Chronic Illness Pet Peeves

If you know someone living with a chronic illness, here are some things to avoid doing or saying to your friend or loved one.


  • Have you tried x: A person I follow on Twitter did a running list of things people have asked if she has tried to treat her degenerative autoimmune disease. If I had to make my own list, it would be “have you tried this special alkaline water, going vegan, going gluten free, this special cream, these essential oils, drinking this tea, drinking this juice, etc., etc., etc. It can get frustrating when I’m in a lot of pain and taking really powerful pain medication. If my powerful medication that suppresses my immune system plus pain killers aren’t cutting it, I hardly think ginger tea is going to do the trick.


  • You don’t look sick: While on the one hand, I take it as a compliment that my extreme efforts to hide my invisible illness are working, it can be tough when people are judging the level of “sickness.” People who live with a chronic illness work really hard to appear normal, but sometimes, we need the help offered to those with visible disabilities. When I was traveling alone with my kids, I felt like I needed a t-shirt that said I was not healthy. I was struggling to wrangle my kids and my small carry-on bags and no one offered assistance because I don’t look sick.


  • I know how you feel, sometimes my headache won’t go away even after taking ibuprofen: OK, I try really, really hard to not minimize other people’s pain or illness. Everyone experiences pain. Everyone gets sick. However, most people’s pain or illness is short-lived. A person with chronic illness will likely never get well. They may have good days, but they won’t be well. So, when a healthy person compares his/her headache that goes away in a day or two to someone who lives with debilitating migraines (not me, just an example), it can feel dismissive. I promise, it’s not the same thing. A headache is not the same as chronic illness. Chronic means all the time. It can be hard to hear the comparison when you aren’t feeling well.


  • My mom’s friend had the same thing and healed it with x: While that’s great that your mom’s friend was able to heal her chronic illness with an herbal remedy or essential oils, it is extremely rare for that to happen. Most people have many doctors working hard to keep their condition under control so it can make them feel like you think they aren’t trying hard enough to heal themselves. Also, every body works differently so what works for one person may not work for another person.


  • Oh I could never put those toxins in my body or anything about big pharma: Those toxins and big pharma provide life-saving medication to people. Without “big pharma” there wouldn’t be cancer treatments or pain medication. Without big pharma, I would miss out on many important moments in my kids’ lives because I am in too much pain to function. I’m a big fan of big pharma and it is insulting to those who need medication to function when people critique medication. It is also tough to hear someone say that they wish you wouldn’t take so much medication. Trust me, most people with chronic illness would rather not take medication that usually causes other health issues or not fun side effects. We take it because it is the only way we would be able to reasonably function in society.


  • People with chronic illness must have done something to deserve it: Recently a politician (Alabama Congressman Mo Brooks) tried to justify his repeal of the Affordable Care Act by saying that people who lead good lives don’t get chronic illness. I can not express enough how much that comment made my blood boil. I was furious. First of all, who cares if someone did something that caused an illness (for example, smoking)? Does that mean their life isn’t valuable? Additionally, there are many, many people (like myself) who did nothing to get sick. I have never smoked, my weight has always been normal, I used to exercise three times a week and eat healthy. In the end, it didn’t really matter. Life sometimes deals you a bad card. To blame someone for their illness is shameful.


Of course, these are just my opinions, but I have seen the same pet peeves expressed over and over again by my fellow chronic illness warriors. If you already committed one of these pet peeves, don’t stress about it too much. Your friend or family member has heard it before and chances are, they aren’t holding it against you. I only really get angry with ignorant people like Congressman Mo Brooks who should be representing all Americans but is willfully ignorant and cruel. (Don’t worry, that’s my last political comment.)


Don't put your foot on your mouth when speaking to someone with a chronic illness. Pet peeves of people with chronic illness.


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