Toxic positivity & chronic illness
This post is aimed mainly for the people who aren't chronically ill themselves, but for those who know someone dear to them is chronically ill. Although I think a lot of chronically ill peeps will be able to relate to this post.
"Stay positive." It's something that pretty much everyone hears in their life. In our darkest moments, we will always have someone telling us to be as happy as possible. Remember the last time you were upset, and someone told you something like this. How much did you appreciate this?
Sure, it can definitely help under certain circumstances. Let's say you failed a test at school. Your parents telling you "it's okay, better luck next time!" could actually cheer you up. But what if it wasn't just any test, but an important exam you failed. "Better luck next time!" is a lot less pleasing to hear. You failed your exam, you won't be able to go to your next year, all your friends did pass so you won't be in their class any more, and the next time you do the exam will be over a year from now. The phrase "better luck next time" sounds bitter more than anything. And definitely isn't appreciated.
We as humans often feel inclined to turn anything bad into something positive. It's a natural response. You see someone you love in pain, you want to be able to say something that will make it better. But we have to be realistic, there will be times when someone is in pain (physically, mentally or both), and there is nothing to say to make it better. And you trying to make it better, only makes it worse.
I've only had my fibromyalgia diagnosis for almost a month, but I've had episodic pain for over a year now and constant pain for almost 5 months now. Especially this last month has been rough with toxic positivity.
Receiving the fibromyalgia diagnosis was hard. At the time of being diagnosed, I didn't know too much about it. I had read about a few symptoms, but I honesty didn't think I could have it. So once I did some research, I was devastated with my diagnosis. And something I noticed, is that a lot of people were trying to help me by saying uplifting things.
"But Elke, what's so bad about that?" What bothered me the most, was that I wasn't even diagnosed for a week and people were telling me to cheer up. Telling me it could be worse, telling me what has helped them when they had pain once, it will get better, it will pass. And I always had the same response: "Let me be sad for a while."
I had just heard I had chronic pain. I have a very frustrating diagnosis. Doctors can't tell me what it is in my body that is causing all of my symptoms. There is no medication. I need mobility aids to get around. I will need a very intense form of rehabilitation. So yes, I was pretty depressed for a few days. The last thing I needed, was to hear it could be worse. I was grieving, grieving the life I once lived. I was in denial of the life I was forced to start living.
Maybe you're thinking that even though your positivity isn't welcome, but it can't hurt, right? Unfortunately, you're wrong. Being told that something could be worse, tells me I am bothering you, that my pain isn't severe enough to be upset about. Maybe that isn't your intention at all, but it is somewhat implied. We also internalise this way of thinking. I tell myself "it could be worse" so I can't feel bad. Even though my head can be pounding, my joints burning, with no energy in my body to do even the simplest of tasks, I'm still not allowing myself to feel bad. Because there is someone out there who has it worse.
Not only does this phrase negatively impact me, it impacts my surroundings. Let me take a friend of mine, who I will call Jane Doe for the sake of anonymity. Jane suffers from an undiagnosed eating disorder and body dysmorphia. And a few weeks ago, she told me she felt bad whenever she talked about her struggles with her body to me. "You're actually in constant pain, you have it so much worse." Do you know how heartbreaking it is to hear that? She is struggling with something I know can be so challenging. She is in (mental) pain, but "it could be worse." I am still here for Jane, I don't think of her pain as less or not as important as mine. I don't want her to feel like that.
Of course, there are many things chronically ill people are frequently told that do more damage than good. "I had pain here once, so I did x and y and it went away." We already tried x and y. We tried the whole alphabet. "It will pass." No, it's a chronic illness. It can get better, maybe. I could go on and on.
Discussing toxic positivity is awkward. Because I realise all of these things are said with love, with the intention to help, to put a smile on my face. So I don't want to point out that you're actually hurting me by saying this. I often will just smile and nod through it. And I get it, I really do. I too have done this in the past, I probably still do without even noticing. And I also understand that my loved ones also have to adapt to my new life. You don't get a handbook on how to deal with your chronically ill daughter/partner/friend/etc. So that's why I'm posting this, to educate.
Instagram account @unchartedmalady posted a quote a few days ago that inspired me to write this post. "We don't seek solutions or treatments from friends or family. That is what medical professionals are for. We want support, understanding and empathy." This perfectly describes how I feel about this.
I'm in pain, every day. Some days, I get a lot done. Maybe I'm in a little less pain, but that isn't necessarily the reason. I could be excited to do something, I could have rested a lot the days beforehand, maybe I just somehow woke up with more spoons than usual. There are also days where I am not able to do much. There are even days that I can only get out of bed to use the toilet. Maybe this is a really bad pain, but that also isn't necessarily the reason. I could have received bad news, I have just done something 'big' the days before and need to rest, maybe I just woke up with less spoons.
On my good days, I don't need much support. But on those bad days, I need you. And I don't need you to help me. I need to be able to tell you "today fucking sucks, this is why" and for you to listen. Seeing your loved one is in pain is uncomfortable, you will feel the need to say something positive to cheer them up. This might sound blunt, but learn to deal with that uncomfortable feeling. Some appropriate responses could be:
"Do you know what to do on days like this?"
"Have you been able to discuss this with (medical professional)?"
"I'm sorry you're going through this."
"Can I help you with anything?"
Something that I personally think is a great alternative to saying something positive is: "I wish there was something I could say to make you feel better." This acknowledges that you want to say something to help, but that you realise there is nothing you can say to help. And also, be honest if you don't know what to say. "That sounds awful, I genuinely don't know what to say." There is nothing wrong with being honest about that.
And to finish this post off, I am not here raging against everyone who has every said something 'toxically positive.' I am here educating about this. It's okay to make mistakes, especially if you didn't know about this. And maybe you will still make this mistake every now and again, that's okay. As long as you're trying. We're all human, we all make mistakes. If you're ever not completely sure how to handle a situation with your chronically ill loved one, please just ask (respectfully).
(Credit for image goes to uncharted malady on instagram. Click here to visit their profile)
