Struggling With the Loneliness That Endometriosis Brings

There are different kinds of loneliness. There’s the one that can afflict us during specific festivities of the year if we don't have a "typical" family dynamic or if we live far away from any relatives.

There is the kind of loneliness that comes from being a bit of a misfit at school, college, or work, and you struggle to find your crowd. But there is a particular kind of loneliness that no amount of people around us can remedy.

I am talking about the isolation that comes from living with an invisible illness like endometriosis. And I can't seem to shake it off.

Feeling forgotten because of endometriosis

For endometriosis patients, being unheard means isolation. As patients, we talk to many doctors who will happily admit they know nothing about our disease.

I wonder if they are aware of how unheard that makes us feel. We can't force others to read up on it, but I wish that we could because statements like that are incredibly isolating. Are we really that rare?

Others don't understand the symptoms and pain

Even friends and family can sometimes miss the mark. Our symptoms vary so much, and our pain is often disguised by medication. Sentences like "I thought you were doing better" or "You seem fine to me" only prove how misunderstood we are in our suffering.

Loneliness during flare-ups

During my period, I require support that I can't get. I lost a lot of blood during my last period and endured so much pain that I should have probably gone to the ER. Yet, I had no one to drive me there or look after my dog while I was away.

Yes, booking a taxi and calling friends to ask for someone to come pick up my dog Jarvis would have solved some issues, but when you are exhausted and almost passed out, it's easier to just stay horizontal.

During my flare-ups, I could eat better, but during these times, I become too useless to cook. Being single means there is no one to prepare a nutritious meal for me.

The silence is deafening at times

The loneliness that comes with this disease is sometimes insurmountable. And I cannot find a solution to it.

Even when I share my symptoms on social media, maybe one or two people offer solid support, yet everyone else says nothing. Even close relatives remain tight-lipped.

Is it a lack of understanding? Not knowing what to say? Complete unawareness of the harshness of this disease?

My last relationship couldn’t handle life with this illness. The longer that I live with endometriosis, the more I realize I don’t want to do it either. So, as I contemplate my future, I think about a hysterectomy and wonder whether that would bring me relief.

But then it hits me: Who will be there for me while I recover, walk my dog, care for me if postsurgery become complicated?

True understanding is out there

I often get the best support from fellow patients. I have a good friend that lives on a different continent from mine and regularly writes to me (hello Keri!). There is also the friend who helped me get diagnosed because of her own experience with this disease. Truly, only they understand everything that comes with this: the complicated surgeries, the embarrassing period-stained clothes, the IBS-like symptoms, the weakness, and the isolation.

There is support within reach

I am grateful for this community. I know there will be many of you reading this and, quite possibly, nodding along. And for all of you, I am grateful. Because of you, life with endometriosis becomes a little less lonely.