What You Should (and Should not) Say To Someone Chronically Ill 101

As someone who has come out publicly as being debilitatingly ill, a lot of you have no idea what to say to me. This is especially true for those of you who haven’t seen nor spoken to me since I was healthy and have no idea how to approach me now. Because of this, I wanted to share some tips as to how to speak to someone who is chronically ill.

Asking me if I’m okay over and over again is pretty much just frustrating for me. Just because I’m sick doesn’t mean that I’m made out of glass. Asking me if I’m okay 5 times in like 60 seconds is ridiculous. It’s frustrating because it makes me feel like you only see me as a sick person. It’s also frustrating because I’m rarely ever completely symptom free, but I try to distract myself from that and being asked if I’m okay continually just reminds me about the symptoms. If I’m okay the first time you ask, I’m probably still going to be okay if you ask me again three minutes later. If I’m honestly not okay, I promise that I will tell you, so there’s no need to keep asking!

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You can tell me that you’re sorry that I’m sick, but please try to refrain from going on and on about how much you pity me. It makes me feel like you think my life lacks worth if you tell me about how sorry you are about the state that my life is in. Being sick doesn’t make my life less meaningful than a healthy person’s life is. Just because I have diseases, it doesn’t mean that my life is miserable. And if I was miserable, going on about how terrible my life must be would only be reminding me of something that I’d want to forget. Bad things happen to people all the time, some people see their loved ones die, some people have financial issues, and some people go through bitter breakups, being sick is just another one of those things and it’s what happened to me. This state of life is okay too. You can be miserable about it or you can turn a tragedy into a triumph. The truth is that I am probably happier than a lot of you are. I have a wonderful family at home, an amazing boyfriend, incredible cousins and great friends. I can’t pursue teaching anymore, but all I wanted was the bottom line of be able to help people and I still can by sharing my story and ideally one day working in the health care system. Yes, life didn’t go the way that I planned it would, but my life is still pretty damn awesome the way it is right now. Life wouldn’t be an adventure if it went exactly as planned. There are admittedly a lot of bad things in my life, I’m often in pain, I can’t always manage to walk, I am chronically nauseated and can’t do all of the things that normal people my age do, but don’t feel bad for me, there’s a lot of good in my life too and that’s what we should all focus on.

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Please don’t say, “You’re too young to be sick.” I am young. I am sick. Welcome to reality. There are hospitals out there just for sick children, so it’s clear that no one is too young to be sick. People can get sick at any age, don’t be fooled into thinking that it only happens to older people.

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It is honestly okay to ask about my health and about how treatment is going, but please remember that my health is not the ONLY thing we need to talk about. I would love to share how my health is. I don’t mind when people are me about my health, but try to remember that we can talk about things beyond my health as well. We can talk about TV shows, your life, my life outside of my health, school, politics, global warming, the price of gas, llamas – we can talk about anything, so please try not to limit the conversation to solely about my health.

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“You’ll get better if you pray,” is high on the list of things that you should not say to me. You do realise that there are many highly religious people who are sick and who have died from their illnesses, right? A sick person typically comes across many different people who follow many different religions and gets told that if they pray to the “right” religion that they’ll be cured. It is also a important to realise that there are atheists out there and for them, prayer is not something that they take part in. Please keep in mind that not everyone shares your beliefs.

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I’m not going to magically heal if I just do yoga and change my diet, so don’t bother recommending it. It’s strange when a healthy person who knows nothing about your condition tries to tell you how to cure your disease. And by strange I mean infuriating. There’s the possibility that diet may improve one’s symptoms, but it certainly is not a cure and certainly does not help everyone. Just because something may help one sick person, it doesn’t mean that it will help anyone else, even if they have the same condition. Our bodies are all very different, and our illnesses impact us all in different ways.

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Avoid saying, “You’re not as sick as you made it seem.” Seriously. My symptoms are fluid, sometimes I’m okay and sometimes I’m not. If you see me out doing something that I say I can’t really do, it means that I’m either having a decent day, or that I’m really pushing myself to do it in that instance – this is NOT a representation of my overall life. It also means that I will have to spend days trying to recover from my good day or from pushing myself. My abilities vary from day to day, even from hour to hour, or minute to minute. If you catch me in a good moment, you should be glad that I’m having some relief for once, not accusing me of not being sick as I made it out to be. Why would ANYONE pretend to be sicker than they actually are? Why wouldn’t I go to school or work if I had the ability to do so?

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If you don’t know what to say to me or can’t handle talking about my health, we don’t have to talk about it. We don’t need to talk about it if you’re uncomfortable with it. Hearing that someone you know is very sick can be difficult. We can talk about anything else, I don’t mind. It is nice if you throw in something that explicitly lets me know that you do care though, if you do indeed care. You can tell me that you care about me, that you hope I feel better or even just directly tell me that you can’t talk about this but that you do support me nonetheless. It helps to know that there are people rooting for me.

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“At least it’s not cancer,” is NOT what I need to hear. Guess what? Of course I’m thankful that I don’t have cancer but that doesn’t mean that being sick isn’t difficult. There’s a huge amount of research being done to cure cancer and there is a possibility of treating cancer – which is not true for many rare diseases. Many people can die as a result of chronic illness too. There are so many diseases that can and will progress until it kills you that science is doing absolutely nothing about. I’m not saying that cancer is a better choice, because it sure as hell isn’t and I am thankful that I don’t have it, I’m just saying that you can’t compare apples to oranges. You don’t say, “At least it’s not cancer,” to someone who just lost their job or is going through a divorce, so I don’t understand why it’s okay to say that to someone who is very sick. Yes, I’m not dying but knowing that I’ll be sick for the rest of my life unless something magical happens is not easy. Playing the whole, “It could be worse,” card doesn’t make having all the diseases in the known universe any easier.

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If you want to give me a hug, I am all for it, but don’t approach me as if you’re awkwardly about to pet an animal that you worry may bite you. It’s a strange analogy, I know, but I swear I’m not contagious. I won’t break if you hug me. I’m still a person, I’m not an object. It’s really awkward when you can tell that someone has mixed feelings about hugging you and doesn’t know how to hug you… and trust me, I can tell. I’ll give you a tip – hug me the same way that you’d hug anyone else.

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Do NOT under any circumstances say, “But you don’t look sick,” to me. Guess what… my diseased body parts are inside of my body, not on the outside. You can’t see the damage inside of me, so me looking okay does not mean that I’m not sick. And if I look okay, it’s the result of layers upon layers of make up caked onto my face to cover up my exhaustion. Telling me that I look too good to be sick makes me feel like you don’t actually think that I’m sick.

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My last and most important tip is that you should talk to me in the same way you’d talk to everyone else. Just because I am sick, it doesn’t mean that I’m not still me. I’m not just a diseased piece of meat. I didn’t lose my ability to have a conversation when I got sick, but a lot of you seem to have when you address me. People can get so awkward and struggle in trying to speak to me. If you think you’re playing it off.. trust me, you’re not. I know it can be difficult to address someone who is sick, it sucks to see someone you once knew as healthy and enthusiastic like this, but guess what? We can talk about the same topics that we’ve always spoken about, in the same manner that we’ve always talked about it in. I am still me. I am still the interesting, weird, strange, opinionated and oversharing person that I have always have been. I cannot stress this fact enough, just because I am sick does not mean that I’m not still me.

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