If you’re here reading this specific post, you probably know someone who has told you that they have an “invisible illness” or they suffer from chronic pain or a chronic condition.
I’m going to be quite honest and tell you upfront that this is a very sensitive topic but one that needs to be addressed.
You may be here because you want to learn more on how to support them or maybe you’re here because you aren’t sure what to say.
Maybe you’re here to simply share this post with friends or family or maybe you want to comment and add to the list of things you have had said to you that made you angry, hurt, ashamed, etc.
I know that this small list of 10 is only a sample of what folks have had to deal with and there’s so many more. This list was taken from survey responses from folks that have an invisible illness or who suffer from chronic pain and again, does not include all of the replies I got and does not go into as much depth as some of the replies I got. It does however contain enough to open this up for awareness and allows for the opportunity for further discussion.
Regardless of why you’ve stumbled across this post, on behalf of my fellow warriors, thank you for taking the time to read this one.
For those that don’t know, an invisible illness is one that does not always exhibit externally visible signs or symptoms.
Folks diagnosed with an invisible illnesses may have symptoms such as pain, fatigue, dizziness, weakness, rapid heart rates, feeling as if their skin is on fire and so much more.
I myself, have 4 diagnosed invisible illnesses including fibromyalgia, rheumatoid arthritis, ankylosing spondylitis and long COVID.
I wake up every single day in pain along with long list of other things that I have to live with and sometimes, just taking a shower can leave me light headed, exhausted and out of breath from the whole routine of simply trying to get ready for the day.
When you see me though, most of the time I just look like everyone else and you’d have no clue on what my life looks like outside of what you see right there in that moment unless I sat down and told you about my day or what I’ve had to go through. You may see me laughing, joke and even out socially every once in a while but that doesn't tell the whole picture.
So, now that you have a better idea of what an invisible illness is, let’s get to the nitty gritty of things not to say.
These 10 things are what many of my fellow warriors have shared with me that they consider to be hurtful and unhelpful to hear.
I myself have said some of these things and I cringe a little as I write this blog post knowing that. I do apologize to those that I’ve hurt, it was not said with any ill will.
- “But you don’t look sick.” As I mentioned above, many of these illnesses are not externally visible and unfortunately when people can’t see something, it’s often dismissed with disbelief or skepticism. When you look at someone with a cast on their arm, you know that they’ve been through something but because we aren’t wearing a cast, etc. people think differently unfortunately.
- “You’re just being lazy.” Many of us with an invisible illness want to do so much more than our bodies will allow us to do and there is only so much you can mentally “push” through. We often experience severe fatigue and exhaustion, even a heaviness of our bodies, that limits much of what we can do. Some folks who have never experienced any of this, feel that we’re just being lazy.
- “You’re overreacting, it’s not that serious.” I can remember when someone said this to me. “Oh, it’s not that serious, it’s arthritis. I have a little arthritis and I’m fine.” “Um, hello. Have you googled what I have? Have you seen that my spine and rib cage could fuse together and that I could be in a wheel chair someday if this illness gets that severe?” I thought. Simply downplaying the severity of what someone is experiencing can make someone feel invalidated or dismissed.
- “It’s all in your head.” People with an invisible illness are not making this illness up. We do not want to live our days in pain and would gladly be out enjoying all the things that make us happy. Heck, I’d rather be working on doing my household chores which I don’t like to do if I could just be normal again. Telling us that that it just in our head makes us frustrated and sometimes hopeless.
- “You’re too young to be sick.” Invisible Illnesses do not discriminate against anyone. You can be any age, gender, race, etc and may come down with an invisible illness. There are many young people who suffer from severe forms of chronic pain.
- “Maybe you should try ____ diet or exercise. Or have you tried ____ treatment?” These statements are extremely popular amongst people who are well intentioned however, it can come across as being just plain dismissive of what we’ve tried to do to get better or to manage our illness.
- “You’re lucky it’s not worse.” We know this already and minimizing someone’s struggles can make someone feel unheard and unsupported.
- “I know someone who had the same thing and they got better.” Everyone’s experience with an illness is unique. Even in my own journey, things that used to work for me no longer do and there was a period where I was in remission and I got better but once I got sick again, new symptoms appeared out of no where and it has been way worse than before. Point is that when we try to compare one person’s journey to another, it can be unhelpful and invalidating.
- “It’s not that bad, at least it’s not cancer.” Having an invisible illness and having cancer are two different things that people go through and should not be compared. This statement can be dismissive of what the person is struggling with and what their experience is like.
- “You’re just seeking attention.” This accusation can be hurtful and dismissive of what someone’s genuine experience is with their illness. I don’t think anyone wants this kind of attention.
You’ve now seen some of what my fellow warriors shared with me when I interviewed them for this post. Some things to remember when talking with anyone, not just a person with a chronic condition but EVERYONE.
- Remember to offer kindness, empathy, and support even if you know nothing about the condition that they have.
- If this person is someone close to you, educate yourself on their condition so you know what they may be dealing with.
- Believe them and validate their experiences.
- Avoid making assumptions or giving unsolicited advice.
- Offer emotional support and listen to what they are actually saying to you.
- Think about how YOU would feel if you were in their shoes.
I hope you found this post useful!
If you have any other tips or resources you’d like to share, please leave a comment below. And if you enjoyed this post, please share it with your friends and followers.
In this together,