Pet Peeves About Having a Chronic Illness
A while back on my Instagram page, I started a discussion on what people’s biggest pet peeves were with having a chronic illness. Just by doing so, I found that we all go through such similar situations, and just by asking a simple question, I was able to realize just how alike we really are. It brought us all a sense of community, too. I wanted to share a few of the pet peeves here, and elaborate on them.
This is one of my more popular topics and one I talk about a great amount. I had no idea before having a chronic illness just how debilitating the symptom of fatigue would become to my life. It’s probably the most frustrating thing I deal with on a daily basis. The simplest tasks can take all of our energy, and that’s just it for the day. For example, pretty much any time I go to the mall, no matter for how long, takes all of my energy for said day. I also tend to feel like crap after I’ve been out in public for a few hours, but that’s probably my lowered immune system, who knows. It’s tough for friends and family to understand just how debilitating the fatigue really is. I often think to myself that I would rather the pain than the crushing fatigue because at least I wouldn’t feel like a lazy sack of potatoes. I just hate being in bed all day. There’s nothing to be sorry for, we just need more rest than most.
This is always really hard to deal with. I went through this the hardest when symptoms first showed up. I shut myself out from the world and basically became a hermit, aside from going to the doctor multiple times a week. It’s especially hard to explain something to someone that they’ve never experienced themselves. I’ve found that since I’ve been more open and honest with my illnesses, most people are interested in learning more about my experiences and what it’s truly like to live with a chronic illness. As bad as it sounds, those who don’t care can get lost. We only have so much energy to give, and people who don’t care to listen to us don’t deserve our energy. Instagram has a great community of spoonies to connect with and talk to whenever you need to.
I’ve dealt with this since the very beginning, as I’m sure everyone else with a chronic illness has too. It’s always hard to have to cancel on our friends or loved ones, and for them to try and understand why we have to so often. It’s completely fine and normal for them to get mad, too. I feel like I’ve had to cancel on people a thousand times, but realistically, sometimes that’s what we need to do to take care of ourselves. At the end of the day, it’s my body and well-being that’s the most important, especially when we’re dealing with chronic pain. I find that just being honest with why you have to cancel is the easiest way to go about it, just telling them that you’re too exhausted, or in too much pain, beats coming up with an excuse every time for why you can’t go somewhere.
I still deal with this so often and I don’t think it’ll ever not be frustrating. Despite telling people over and over that this isn’t a quick fix and it’s not going away, most of them still don’t understand. I think it’s probably a crazy thought for most people to have; “Being in pain FOREVER?! That’s insane.”. It’s definitely hard to wrap your head around, but it’s also a REAL issue that millions of people deal with. Also, the word chronic literally means “long-lasting and difficult to eradicate”. I feel that with more openness and awareness, this might get easier as time goes on. I hope it does.
These are just some of the pet peeves people with chronic illnesses have on a daily basis. Trust me, there are many more, but this is all I wanted to share for now. I hope everyone’s ready for the warm weather and sunny skies that are to come, and hopefully relatively low pain days!