So when someone has a rare disease, most people just don't know what to say to that person. They say things that may end up making us feel worse. They don't understand what it's like to have life-threatening diseases and shrug it off because when you sit down and really think about it, it's quite depressing, and no one wants to think about that. So they say things that most of the time, don't make much sense, or they say things that are not beneficial to us. I've had some people even tell me that they have no clue what to say to me, and that's fine. It's okay not to know what to say.
5 things NOT to say to someone with rare/chronic diseases:
1. "Just be thankful, it could always be worse."
*Facepalm*. This sentence just makes me so mad. Yes you're right, in a way, my problems could be worse. But you know what? I could also be so much better. In no situation is this phrase acceptable to say to anyone. DO NOT compare my problems to someone else who you think is worse off than I am. We are all fighting some type of battle and there is no logical reasoning for you to compare them. How dare you get to say whose problems you think are worse.
5 things NOT to say to someone with rare/chronic diseases:
1. "Just be thankful, it could always be worse."
*Facepalm*. This sentence just makes me so mad. Yes you're right, in a way, my problems could be worse. But you know what? I could also be so much better. In no situation is this phrase acceptable to say to anyone. DO NOT compare my problems to someone else who you think is worse off than I am. We are all fighting some type of battle and there is no logical reasoning for you to compare them. How dare you get to say whose problems you think are worse.
2. "You look great, you must be feeling better!"
I know that most of the time when people tell me this, they're just trying to be nice and find something positive to tell me. But that's why I'm writing this post, to address this issue. This is not something me, or anyone with rare/chronic diseases want to hear. As terrible as we feel every single moment, every single day, hearing that we look great isn't necessarily a compliment. It's another reminder that people view us as normal, healthy looking when we couldn't be any more of the opposite.
3. Everyone gets sick, tired, or has the occasional *insert symptom here*.
First off this is just pretty rude. Not only are you demeaning my pain and diseases, but you're telling me that my problems aren't that bad. Everyone gets sick here and there. Everyone feels tired sometimes. Occasionally, people will get a headache or they will have pain somewhere. Yes, you're absolutely right. Sometimes people will feel this way and will get the common virus or get a headache or maybe some other symptoms from stress/work/school. But no one feels the exact way I do. The "occasional" symptoms one may experience are not like mine. The fatigue I feel is the kind of tired sleep cannot fix, etc.
4. You take too many medications... that's why you're so sick... etc...
Some people refuse to take medications and prefer the more alternative route, which is totally fine. But don't judge me because I don't. In my case, doing alternative therapies are not enough. I have to take these medicines and I have to take a lot of them. I know that with each medication I add, the risks of side-effects and interactions are higher. But this is a process that my doctors and I work together on. The benefits outweigh my risks and I am not physically able to have the choice whether or not to take prescription medications. Yes, I've tried vitamins, and other alternative treatments. But in order for me to regain as much normalcy as I can, prescriptions are a part of that. Without these medicines, I can truly say I wouldn't be alive today.
5. If you just think positive, then you will feel better.
Trying to remain positive despite all the negative things happening to my body is difficult. I know that staying positive is what is best for myself. But that doesn't mean that those moments when I need to be angry or sad are making me worse. I am not sick or making myself worse by not being positive 24/7. Being positive will not rid my body of any type of illness or disease, it's not going to cure me. I try my hardest to not let my rare diseases get the best of me, but sometimes they do, and you know what? That is okay. Being positive is not going to cure anything but it can help boost my well-being.