To the Caregivers Who May Not Even Know They're Caregivers

For the people who comfort, listen and love. For those countless trips to the freezer and cupboard for the ice packs and Advil. For the rub downs in the middle of the night and always warming up the heating pad before I sit down.

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

Dealing with chronic pain and injuries is an art. It’s an art I am still learning to perfect myself, but I’m getting pretty good at it. It’s a delicate dance between resting too much and resting too little. It’s one thing for me to take care of myself because I know what hurts. It’s a whole other ball game when it’s someone else.

In my life, I was used to boyfriends not understanding my struggles in the slightest and not embracing the want to learn more about it. I was used to hearing how exhausting it was for them to see me limp around and how much I slowed them down. It was then I realized I would just have to learn how to hide it the best I could and deal with it on my own — that is until I met a man who would change everything.

I owe my almost pain-free days to him. He has taken on a role in which I didn’t think I needed but wouldn’t want to go a day without. He is caring and gentle but the strongest rock to cry on. His evenings consist of researching how to improve my quality of life and learning as much as he can about my condition. He has learned that “quiet” means pain, and pain means gentle hugs. He is the first one up in the middle of the night when I’m writhing in pain to rub my aching legs and to plug in the heating pad. He is the first to tell me every day that I am not a burden and how strong I am. He calls me beautiful through my tears and holds my extremely hyperextended fingers with pride.

We both know I will never stop dislocating or truly be pain-free, but his optimistic hope for the future is contagious and I know he will be with me for every step of the way.

This letter is for everyone out there who know all the ugliness of a condition and don’t scare away. This is for the ones who know this doesn’t define them as a person and anything can be conquered together. This is for the people who have to watch someone they care about in pain and don’t shy away.

I am stronger with him now than I ever thought I would be. He builds me up and then holds me up when it becomes too much. He is one of the strongest men I know, which only inspires me to continue to stay strong.

When you have a chronic illness you learn to get through every day by yourself, but if you’re lucky enough to not have to, spend every day showing them how much you care.

Thank you.