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

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.