Having an invisible illness means outsiders may not notice many of the symptoms and/or side effects of your illness. They may also be oblivious to the things you do each day to cope. What looks to others like relaxing on a chair may actually be your way of lessening your pain. Wearing sunglasses indoors may seem like a fashion statement, when really it’s a necessary migraine prevention tool.
We asked our Mighty community to share the things they do that people don’t realize are because of their invisible illnesses. If people take a closer look, they’ll see the adjustments and strategies you use to cope with your illness every single day.
Here’s what the community told us:
1. “Canceling plans or avoiding making plans with friends. It’s not that I don’t want to see them, it’s that I don’t know if I’m able to even get myself dressed that day. I feel so bad, and I may seem flaky, but it’s not me, it’s my illness.”
2. “I don’t eat when we get invited out to dinner or at parties. Most food isn’t Renal diet friendly and not prepared clean enough for my immunocompromised immune system. I’m not trying to be rude, but I can’t risk my health to make a host feel good about themselves.”
3. “I often have brain fog due to Ehlers-Danlos syndrome. When the brain fog hits it’s like a tidal wave. I often will mess up the simplest tasks. I once destroyed a decorative burner cover by forgetting to remove it from the burner before trying to cook rice.”
4. “I wear sunglasses indoors because my sensitivity to light is so bad that it causes severe pain and nausea. Even with sunglasses on outdoors, if I don’t have a hat, I need to shield my eyes with my hand like I’m saluting someone. People tend to make sarcastic comments about these things without realizing I’m doing this to minimize my pain.”
5. “I show up early to church to be able to sit in the comfortable chairs up front due to my chronic back injury and my heart-related complications. I often have to sit through most of the worship service.”
6. “At work (the days I can actually make it in) I put on my headphones and tune out the world. Whether I’m listening to music or getting lost in a book, it helps me focus on something other than the pain.”
7. “Not letting people come visit me at my house or just stop by to drop stuff off because the inside of my house is a disaster. I can’t keep up with the cleaning because I have to put all my energy into everything else. I usually just blame it on the dogs.”
8. “When dining out, I’m not trying to be a diva by asking to swap seats or adjust the lighting. The smallest flash of light can trigger an attack, and I don’t want you to witness that, especially in a public place.
9. “One thing I’m sort of self-conscious about is wearing a visor or hat, even indoors. I get headaches very frequently and even the smallest bit of light can cause me to get such a sharp pain that I have to close my eyes and stop moving for a bit.”
10. “When shopping, I park next to a cart corral with carts in it instead of looking for the closest parking spot (no disabled tag or sticker on my car – yet). That way, I have a cart to lean on when going into the store and I don’t have to go far to return the cart after shopping.”
11. “I use an Altoid mini case for the medication I need to take when I’m out in public. I keep my full bottles in my purse, but if I’m at work or at a meeting, I don’t want my peers to see me as someone who is sick so out come my breath mints.”
12. “I fidget a lot in class and constantly stretch or move around in my chair to keep everything in place and minimize stiffness from settling into my joints. To my classmates and professors it just looks like I can’t sit still, but I know I will be in pain later if I didn’t move.”
13. “I hold my breath when I am around people so I don’t sigh or groan from pain (then I don’t have to keep explaining what’s wrong…). It also helps me with my anxiety.”
14. “I arrive at appointments early. I can’t help it; I get so anxious about being late, and I also need to mentally prepare for the appointment. So I get there early and crochet or fiddle with a good fiddle tool.”
15. “I wear my heated wrap and scarves all winter and, keep my long hair – all to keep my neck warm so it doesn’t hurt so much and keep the muscle spasms and nerve pain to a minimum.”
16. “I concentrate on not falling down when I stand or walk. Just doing that is very tiresome but people take it for granted.”
17. “In the Netherlands we kiss three times on the cheek. However I try to avoid this as I have multiple sclerosis and don’t want to get extra germs and viruses. And when people are sick, even with a cold or the flu, I have to leave to protect my own body. People find me disrespectful as they feel like I avoid them like the plague; however I’m not so worried about them being sick, more me getting sicker and possible losing body functions or needing to go to hospital.”
18. “I’m constantly taking in my environment — where are the exit doors, the bathrooms, is the room to silent or are there enough sounds — so if my stomach makes weird noises nobody will hear.”
19. “I can’t hug people or shake hands because of my extreme multiple chemical sensitivity and I don’t always have time, energy, or the will to explain myself to everyone, so I just say ‘I can’t hug’ or ‘I can’t hold hands,’ and people are weird about it, especially the handshake one after they’ve ‘offered’ me their hand already. Oh well!”
20. “Everyone thought I was trying to be edgy when I had my head shaved. In reality my condition causes me not to have the energy or finances to wash and style my hair every day, plus the weight of long hair, ponytails, and headbands were causing lots of pain. Now I wear a buzzcut because it’s easy, cheap, and keeps the pressure off my scalp. A bonus is easier access to head rubs!”