If you have a chronic illness and you talk about it with anyone – even just your immediate family or your partner – you have probably run up against some … interesting … conversations. When you’ve first been diagnosed, the people you talk to might unintentionally say some really hurtful things because they don’t understand your health situation, and that can be true also for when someone learns of your health situation for the first time. And it’ll probably be even worse if your disease or condition is something that most people don’t know much about (or at least that the person you’re talking to doesn’t know anything about it or doesn’t know someone with a chronic illness in general). Basically, there are a lot of situations in which someone can say hurtful things to someone with chronic illness.
Last year, I asked my social media followers with chronic illnesses what they wished people didn’t say to them. And, well, there was a LOT. (BTW – Don’t say these things to us!) So since you’ll most likely be in a conversation where something like that comes up, let’s talk about what you can do or say in response.
Most comments can fall into 3 categories, although there are many varieties.
1. The “You’re lucky” comments – Examples include, “You’re lucky you get to park in the handicapped spot!” “I wish I got an extension on my paper like you did.” and “You just want special treatment.” The vast majority of these comments are made because the person either speaks before they think or because they don’t understand the health issue in question. But the last example I gave is usually said because, once again, they don’t understand. Of course, that doesn’t make things any easier. Especially since they tend to really, truly, honestly mean it. So how do you respond? You can say something like, “Well, I don’t really want special treatment for my chronic illness,” or “I’d rather not need an extension or to park in the handicapped spot.”
2. The “You’re exaggerating” comments – Examples include, “What’s even wrong with you anyway?” “Everyone gets arthritis. It’s not a big deal.” or “Why do you always cancel plans?” They can come from a couple different places. One, they’re not aware of the vastness of health problems and the effects they have, including the seriousness of the symptoms and what living with them entails. Two, they can be (quite frankly) selfish and think that your actions reflect your relationship with them or that you cancel plans because you don’t want to spend time with them.
If you don’t want to deal with the energy (physical and emotional) that comes with a detailed response, you can brush them off with, “You should Google [your health condition here] before making an assumptions.” If you do want to respond, you can talk about the real statistics and information about your illness. For example, I’ll say, “Actually, there are over 100 diseases that fall under the umbrella of arthritis, and most of them are autoimmune diseases. Plus, rheumatoid arthritis can lead to organ damage and even death.”
3. The “I know better than you and your doctors” comments – Examples include, “My cousin’s neighbor’s uncle tried [insert random treatment here]. You should try it!” or “If you just change your diet, you’ll be cured.” These comments almost always come from the place of someone trying to help; however, I would argue that sometimes it comes from the belief that you couldn’t possibly have researched your own condition enough or that your medical team couldn’t possibly know better than them, even if that belief is subconscious. This is so completely and totally annoying – and most people I talked to last year for that post agree with me. Don’t you think that we’ve looked up possible cures or treatments for our conditions? Don’t you think that our doctors know more about our conditions than you do?
The only time I want to hear possible treatments (especially the random holistic ones) are if I ask for them, and usually that’s from other patients. Nine times out of ten, my response is generally to smile and change the conversation as soon as humanly possible. The people who suggest these treatments really do think that they’re helping, which is probably the worst part. If you do want to respond to them, you can be polite and say something like, “I know that you’re trying to help, but please leave this to me and my doctors. It makes me uncomfortable when someone without a medical degree tries to give me medical advice, especially when I haven’t asked for it.” If you just want them to leave you alone and stop giving you medical advise, you can say, “Please stop giving me medical advice. I haven’t asked for it and I hate when people who don’t know the full scope of my medical history and don’t have medical degrees give me advice.”
As a whole, there’s a lot that goes into communicating with other people about your health issues. What I wish could happen more than anything else is that people thought before they spoke or researched things before talking to us. If someone thinks that someone with arthritis is making a bigger deal about their disease than is needed, they should research arthritis before saying something like that. Why is that so hard?