With Endometriosis, Your Mental Health Matters
If you watch someone with a chronic disease, especially those of us with an “invisible" illness, you will probably notice very little that stands out. There isn’t much that sets us aside from the rest of the world: A lot of us have jobs, many raise children, others are business owners. To the naked eye, we’re OK. If someone asks, we’re likely to say we’re fine. However, while some flare-ups and other painful symptoms can be visible, what no one sees is what goes on in our heads. The emotional side to a chronic disease - like endometriosis - is a beast of its own.
Hiding the truth
I am guilty of hiding what really goes on inside my own head. There’s a clear disconnect between what I post on social media, what I present publicly, and what goes on behind closed doors. No one sees me without any make-up or unwashed hair, struggling to get out of my bed. No one sees me rescheduling social outings because I can’t face talking to anyone. I have become quite clever at hiding how broken I feel.
To everyone else, we continue to function, even when in pain. Like the rest of the world, we have dreams — but either we dismiss them, aware of our limitations, or our illness does it for us. Seeing ourselves as broken, or as someone who needs constant care, is a hard pill to swallow. We are prone to depression and regularly suffer from anxiety. With stressful medical appointments, life-disrupting symptoms, fertility issues and much more, being completely OK would be a miracle.
The problem is when others see us as heroes
Friends will tell me "how brave I am", or "how much I inspire them". Statements like this make me hide any negative thoughts I’m having. Stupidly, I become dishonest, stating I’m alright, even adding a fake smile. I wonder whether this pressure to present myself in a happy way is exerted by others, or whether I just do this myself. What is stopping me from saying the truth? Is my silence contributing to an untrue view of my illness?
A chronically ill person is not a superhero. We are sick, wishing for a cure, suffering through issues that the average person does not have to deal with. If we had superpowers, we wouldn’t be this exhausted.
I believe that those of us living with endometriosis should be more vocal about our mental health. We need to ask for help, tell our doctors and loved ones what is going on. As patients we need to do this for ourselves, to lessen the weight on our shoulders. As advocates, we must do it to show the truthful reality of our illness.
My own mental health struggles are probably more present that any of the endometriosis symptoms I live with. It’s a side of the disease that needs as much care as every adhesion plaguing our body. And this care begins by speaking up, substituting “I’m fine” with “I look OK, but inside I am struggling”.
Our mental health matters, so let’s talk about it.
Have you ever experienced a "weird" symptom and wondered if it was endo related?