The Mighty Logo

What You Don’t See Behind My ‘I'm OK’ Mask

The most helpful emails in health
Browse our free newsletters

A lot of people say I seem to be a happy person. Others describe me as having a great sense of humor. Although I wouldn’t argue with these descriptions as I often have a big smile on my face, I am hiding a secret. I feel ill every single day. 

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Because of Ehlers-Danlos syndrome (EDS), I get pain in my joints and muscles constantly. My loose ligaments mean I am prone to subluxations, which are partial dislocations, and can leave me in pain for a number of days afterwards.

I also suffer from autonomic issues, which are common with EDS, including gastrointestinal symptoms (similar to irritable bowel syndrome), difficulty regulating my temperature and a thudding heart. I also have severe anxiety disorder, obsessive-compulsive disorder (OCD), and I am on the autism spectrum.

So 9 times out of ten, you will meet me, and I will seem “fine,” apart from perhaps a groan of pain or a sigh that will slip out from behind my “I’m OK” mask. Behind my mask, I am probably feeling nauseous, dizzy and sore. I am probably worrying about something that will more than likely become a full-blown obsessive thought. I am probably in agonizing pain throughout my body. 

I think this is why people are surprised when they see my mask slip. On those days, I have to stop. I have to give in. I have to curl up in bed in tears, hugging a teddy against me.

I have to allow my body to recover from itself. I hate being bedridden, so I will always push myself to absolute breaking point before I allow myself a “sick day.” When I have one, you should know I am in a huge amount of pain, discomfort and generally feeling awful. Today has been one of those days. I am burnt out and spent most of the day sleeping. Tomorrow I will probably be the same. By the following day, you might not even notice there was anything wrong. 

I don’t want pity or people feeling they have to treat me differently, but I do need people to remind me to stop pushing through once in a while. To let myself recover so I can be well longer. But until I hit that point, there will always be a big smile on my face. 

Originally published: July 3, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home