When I Struggle With Guilt Because of My Chronic Illness

I didn’t choose to have arthritis and faulty connective tissues. I didn’t ask to be in multiple car accidents or to require multiple surgeries. I know all of this, but for some reason I still cannot stop beating myself up over it.

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

I fight with myself every single day. I keep so many symptoms to myself — even from my husband — because of the guilt and shame. I berate myself for every new symptom that pops up, and they seem to be endless.

I constantly feel like a burden. I wonder why my husband even stays. I am almost brought to tears every time he has to change his plans to take care of me or when I see the fear and frustration in his face with every new symptom. And the frustration isn’t toward me — it’s from the helplessness he feels. And then I feel even more guilty for causing him to be afraid or frustrated.

Although I am putting a lot of this on myself, society doesn’t help. As an outwardly-healthy-looking 30-year-old woman I come up against disbelief and belittling comments on a regular basis. “It can’t be that bad.” “Oh, please. Just wait until you get older!” “I wish I was as healthy as you!” “All you need to do is [insert random unhelpful advice here]!” Even friends and family members can make me feel awful without meaning to. I’ve had family members hint that they believe the reason I’m having so many health issues is because I don’t pray enough.

When the outside world is telling me that either I’m not ill or my condition is entirely my fault, it just adds to the guilt and shame I already feel.

Logic and emotion are in a perpetual war in my head. On the one hand, I know I don’t have much control over my connective tissue and injuries. On the other hand, I wonder if I’m just lazy and if I pushed myself harder I could overcome them.

I know I am not a burden on my husband and that he loves me and doesn’t mind taking care of me. I know the people who truly matter care about me and do not think of me as a lazy liar, either. I know I am doing my best and I am strong and resilient. I know that I contribute to our household and my marriage. And yet…

Having an invisible illness and/or being in pain all of the time can really mess with your head. You have to mourn the person you once were and the person you thought you would be. And while you’re mourning them, you’ve got countless people telling you that you’re wrong somehow. It’s a constant battle that just adds to the pain and frustration of being ill.

Chronic pain and illness often bring plenty of guilt and shame along with them, but they shouldn’t. We as humans are more fragile than we like to think. We may think we are invincible or “that can’t happen to me!” That is until we aren’t and it does.

I know it’s hard, but try not to beat yourself up like I do. Know that you are worthy of love and kindness and you matter. Of course you should try to stay healthy, but don’t let anyone make you feel inferior because of your illness.