I’ve just realised the post I’m about to write is similar to a post I’ve already written called “Milly”. Basically I want to point out something that people say, which, while well-meaning, actually isn’t very helpful to hear for people with chronic illness. It makes me, at least, feel like you don’t understand my condition or its severity. This phrase is “I hope you are well”. A psychologist recently said this to me, of all people. I really thought they’d know better. Anyone who knows me well enough would know that I suffer with anxiety and depression daily, and have so for the last decade despite being in therapy and on many different medications. I also have problems with my sleep, and my mental health often causes physical problems too such as fatigue and headaches. I do not have periods where I am well, only rare moments, which, if I’m lucky, might last up to a few hours. I just move through various degrees of bad. This might sound grim and depressing but I’m not going to sugarcoat how things are for me. This is the unfortunate reality that I live with, so do not tell me “I hope you are well” because most likely I am not. Similarly, do not tell me “I hope you get better soon”, as if I am temporarily sick or injured and expect to recover in weeks or months.
It is difficult living with chronic illness because I’m always afraid of rejection. I don’t know what to say when people ask me how I am. Sometimes I’d prefer it if they don’t ask. I do often hide my struggle because I fear if people knew the real me they would run a mile. I worry I will burn people out and people will get sick of me or not take me seriously anymore.
It can be quite a turning point when we come to accept we have a chronic illness or disability.
“Once I realized I wasn’t going to get better, I could finally work toward accepting that — living my best life within my body’s limits,” writes Alaina Leary.
“Accepting those limits, though, is a grieving process for most of us. But it’s one that’s made easier when we have supportive friends and family by our side.”
So how can people support someone with chronic illness? Something that a good friend has asked me before, which I think we could all benefit from hearing (as long as we’re not at crisis point and need someone to just throw us a raft/make a decision for us), is “What do you need from me right now?”
Alaina Leary has some great suggestions for things to ask:
“Would you like me to just listen? Do you want me to empathize? Are you looking for advice? Would it help if I were also mad about the same things you are?”
I also really like this article, “What Not to Say to Someone With Chronic Pain”, because it also includes examples of more positive things to say. Some other things I’d add to the list of what not to say are “You don’t want to get better”, “you aren’t pushing yourself enough” and “you’re self-absorbed”. These are things that somebody said to me recently, as I wrote about in another post here. She told me no one would want to be friends with me when I don’t want to change my life. It was a toxic relationship which I didn’t hesitate ending. Something that always means a lot to me is when people acknowledge the little achievements I am able to make. A new friend told me I did a good job in pushing myself to brush my teeth, get dressed and go out. “You should feel proud of yourself in getting so far”, were her words, which is a wonderful thing to say to someone with depression and other chronic illnesses.