My biggest problem with having Endometriosis, surprisingly isn’t the chronic pain, or having to change to the most boring diet anyone could imagine... it’s the isolation. I’ve found that for a number of reasons, Endometriosis for those who don’t suffer from it, is a difficult disease to relate to and understand. I am often dismissed or misunderstood, and I think it’s largely due to the fact that sufferers are uncomfortable about speaking up, and also because the disease is so different for many women. Some women hardly feel the pain or other effects of the disease, while others like me, feel it in the extreme and there hasn’t been a pain free day for me in a long time.
To understand my disease better, I read a lot about it. It helps me come to terms with things, and it also helps me better articulate my struggles to my loved ones. It does make me incredibly frustrated though, to learn that there is such little importance placed on finding a cure or even finding a better solution for treatment/pain management. I read the other day that dysmenorrhea (period pain) can be as painful as a heart attack, but I’m not getting rushed to hospital or injected with morphine. You’ll find me in my bed, crying by myself with a heat pack and a packet of painkillers, cause the disease just isn’t taken seriously. Maybe I’ll message a friend and she won’t reply, cause she’s pretty tired of hearing about it, I’m pretty tired of feeling it and we’re all a bit too used to it, it being a daily occurrence. The shame spiral and isolation continues… What a burden I must be for everyone I’m close to, but I just can’t suffer silently.
The lack of acknowledgement, awareness and research fills me with rage, and my mental state suffers. While I’ve had surgery, I take a daily pill, and I’ve adjusted to what I call the ‘cardboard diet’ for it’s lack of taste and inspiration, I now also need to take steps to stop myself from falling into the approximate 25% of Endo sufferers who think of committing suicide.
My answer is painting. Painting calms me, keeps me occupied, and also allows me to express my frustrations in a healthy and productive way. As an added bonus, I get to teach people about this ubiquitous chronic disease through the images I create. I also get to scream about the disease with paint. I don’t have to try and be careful about scaring people away. Since it’s an image, people who are sick of hearing about it, might find it easier to relate to something visual and instant, and those who do want to know about it or who suffer with me, may find a comfort in the image that words just can’t deliver.
While I think I’m probably always going to have trouble coming to terms with being tied to this disease for the rest of my life, Art has helped me be friends with my disease. I can appreciate it for the motivation and inspiration it gives me every day to make a difference, in the ways that I know how. Releasing my images into the world has also connected me to other sufferers, which diminishes the feelings of being alone and misunderstood for all of us.
I can’t really recommend a creative outlet enough to relieve some of the emotional weight that comes hand in hand with Endometriosis. Take your fire and your pain and build something. It’s a powerful tool for communicating. Even if you’re not particularly skilled… just go for it. It’ll heal your heart and mind, and possibly other people’s too. Communication is key!
I’m hoping to create a space for women with Endometriosis to connect with each other in the future, but for now, if any spoonies need to part with some sorrow, I welcome you to share your stories with me.