I have had lots of poor experiences with people sharing their opinions on my chronic illness. The majority of people I’ve met with health issues experience this same problem. Everyone wants to help but unfortunately, it’s often more hurtful than helpful. I know that most people mean well. I know that everyone wants to come up with a solution. I know that it comes from a place of love. That said, if someone is sharing their experience, ask before giving advice. In my experience, I need to explain that I’m venting and don’t need any help. I just need to state how I’m feeling. If you can’t fight the urge to say something, here is a guide on WHAT NOT TO SAY!
- Are you sure that’s necessary
I know that some treatments may seem extreme. For people struggling with chronic illness, treatments are often intense. However, we’ve had extensive conversations with medical professionals. They are guiding us on how to treat our ailments. You opinion makes no changes in that plan. When something doesn’t make sense to you, questioning our needs is not the right way to ask questions. Instead, ask the reasoning behind why this is the right treatment for us. Or nod along and do your own research later.
- Have You Tried?
Yes, we’ve probably tried it. No, it probably didn’t work. This is the most common thing all of us get asked. I’m vegan, I meditate, I exercise, and I take all the medical advice I’m given. My chronic illness did not go away. Please don’t make useless suggestions. I can promise you, we’ve probably heard it before and it invalidates our experience.
- You Should Stop XYZ
This is difficult for me to hear. I often have people tell me I should stop running. From an outside perspective, it does more harm than good. For me, it has an extremely positive effect with some negative consequences. We have to change so much of our lives to accommodate having an illness. Telling us we should stop doing things we enjoy is offensive. It’s rude and inconsiderate to all we do on a daily basis. Just stop.
- You’re too …. to Have a Chronic Illness
Despite age, exercise, diet, or any other factor, we have a chronic illness. I get told at least every two weeks I’m too young to have a chronic illness. It’s not helpful. In fact, it’s hurtful. I realize that my life looks different. Pointing out how unfair it is that my life is not like the norm is painful. Especially when it’s coming from medical techs performing procedures. It’s not comforting.
- At Least It’s Not Cancer
Where do I start with this one? This is a horrible thing to say. It’s invalidating and extremely rude. Comparing one illness to another is unfair. Comparing someone’s chronic illness, when you yourself are able bodied, to something that could be worse is wrong. That is not your place to determine what could be worse. Everyone is doing the best they can. If someone is struggling to walk, telling them that at least they don’t have cancer is not helpful. It’s unnecessary and aggravating. It makes no attempt to understand our perspective or experience. It’s rude, plain and simple.
I’m sure anyone with a chronic illness reading this is nodding along. At least, I hope I’ve illustrated these points well enough that you can relate. To those reading who don’t have a chronic illness, please take this and learn. You may think you’re above saying these things but often they are said without any realization. Please be conscious of your words. They can be very hurtful and invalidating. There’s no reason to make having a chronic illness more challenging by being uneducated.