Illness Etiquette

What not to say to people with chronic illness! (Part Three)

This post is going to come from an emotionally charged head space because I am currently in the hospital and fighting my hardest just to get through the day. I am trying my best to stay positive and hopeful but I am also feeling as weak and depleted as can be. I have to say that my spirit is beginning to suffer in addition to my physical body. I am also severely frustrated with doctors not listening and the disconnects that happen. Simple things like it taking five hours to receive migraine medicine which means my migraine is going to go from a 3/10 to a 9/10 on the pain scale. Now that you know a little about what is going on, here is the text that got under my skin.

I was truly exhausted so when I got this text from my best friend I simply called her out on it. Like many people, she struggles with knowing what to do or say when I am in pain so I tend to have a filter with what I share. Also, since this message will go out to multiple people, I keep it basic and light not to worry anyone.


The truth is that my arms had been convulsing for four hours straight when PT came to get me for a walk. The truth is the full body convulsion that resulted had six nurses surrounding me in a panic in the hallway where I went down. The truth is tears were running down my face when the convulsions continued to get worse. Once I was back in bed, regained the use of my arms, and could send an update - this is the text that I sent while my arms were still trembling and I was so weak I had to get a sponge bath. That is the physical state I wrote this text in, not to mention the emotional and mental state I was in.


Now, I do not want to make her feel like she did something wrong because I am the one having the issue with her laughing at my pain and I know she did not do it to be hurtful. I know that this is part of our relationship because I am always trying to giggle and find humor in crappy situations but this just felt hurtful and inappropriate to me. It is the first time someone has said something that "irked" me and I actually spoke up on it. Perhaps sharing my story while writing this blog is empowering me a bit. The thing is, when I am sick, I literally copy and paste the same message to family and friends so I don’t have to answer the same questions over and over. It is a way to conserve energy. She was the only response that was not compassionate and it hurt.


So, my suggestion here is to save laughing at someone’s pain for video or in person so you can see their current physical and emotional state and are on the same page as them. Now, we had a video message exchange that morning so she could physically see what condition I was in and did have a bit of context but that didn't seem to be enough. In which case, let's just keep it a loose rule to not laugh at people when they are in pain. If they have paralyzation and are unable to walk - don't make jokes about being immobilized. I don't feel like I am asking a lot but given this situation, it is clear that I am. Maybe if I was physically healthy and having a great day instead of being weak and exhausted, I would also see the humor in this, but I'm not. To find out your second rare disease has triggered a third rare disease is a lot to wrap your head around. When nobody can give you any answers on the time it will take to walk again, drive again, work again - you have a lot on your mind and having loved ones laugh at your pain just feels horrible. I am not going to say laughter is never appropriate because I love to laugh and make light of my issues but timing is everything. There are soooo many other options on what could have been said in response to this text that I am not going to go into them individually or just try to pick one best response. My mind does have a little brain fog and I want to put this issue to bed! If you have any questions, leave a comment or message me directly.


I am going to try to continue blogging and sharing my journey throughout this current health crisis. These days my hands are trembling and my body is weak so I'm not sure how consistent I will be, but I guarantee you that I am trying my best!


Illness Etiquette Miniseries:

Part One

Part Two

Part Three

Part Four

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