Why I Don’t Feel Guilty About Having Endometriosis
My chronic illness buddy has a disease that comes in flares. And a few months ago, she started taking a new medicine to control the most recent one. But on top of her normal symptoms, the drugs were making her feel a different kind of bad. And she worried that she’d become a bit of a drag.
To show her appreciation, she wanted to take her husband on a little weekend getaway. What she meant was that she wanted to thank him for enduring how the side effects were making her feel.
Her husband is great and does not shame her about her illness. But my heart broke for her nonetheless. I knew what she was feeling: Guilt.
I’d felt it plenty of times. It used to set in when I’d cancel plans with friends or turn down sex with my husband. I was disappointed in myself that I couldn’t be better... for them.
But guilt isn’t an emotion I feel anymore. Well, at least not about my health. Here’s why.
My endo guilt started in middle school
As a teenager, I felt bad that I made my mom take me to a lot of doctors. That’s partly because she didn't think I needed them; the label hypochondriac was thrown around quite a bit. Even then, I knew I needed to be my own best advocate. But that didn't stop me from feeling like a burden. (My mom feels bad about this now. But like my doctors, she was clueless about endo symptoms back then.)
I hardly knew where to start my medical quest. I'd never been to a gynecologist, and I wouldn’t find out about endometriosis until my 20s. And I couldn’t ask my friends; none of them complained of anything like what I experienced. So I went to a lot of different doctors about:
- Chronic back pain
- Severe headaches
- Dizzy spells
- Lower right-side cramping
- Terrible period pain
I got X-rays for my back; they were normal. A neurologist assured me I didn’t have a brain tumor. And the ER nurse said that excruciating “appendicitis” pain was probably ovulation. The pooping symptoms were labeled irritable bowel syndrome (IBS). The period pain was “normal.” My spasming bowels were the only thing that received medication or treatment. And I’m pretty sure that's only because a lot of men have IBS.
No one deserves endo
Experts still can’t say what causes endometriosis. But it runs in my family. So chances are, I was born with it. My first period was torture. And things only got worse. My migraines became more frequent. I bled through pads. I threw up on and off my period. And my cramps were so bad my vision blurred.
Doctors failed me for more than a decade, leaving me with no explanation and no help. I only came to my diagnosis after telling my doctor to check for it.
So no, I don’t feel guilty about having endometriosis. Here’s what I feel instead:
- Sadness for my teenage self
- Anger and frustration at how the medical system treats women
- Pride in my ability to navigate a disease with no cure
- Empathy for all of my chronic illness buddies (even the ones I’ve never met)
- Justified exhaustion from having an inflammatory condition that doctors can’t really treat
Reframing my illness helped
Guilt is an emotion that comes with wrongdoing. It’s supposed to deter you from repeating the bad thing that made you feel bad in the first place. But you didn’t do anything to give yourself endometriosis. And that means you should never feel guilty about what it does to you. Instead, I hope you feel strong that you’re persevering in spite of it.
Have you shared your story with us yet on our community stories page?