Endometriosis and Isolation: It's OK To Be Lonely
Way before we were told to stay home due to the scariest of pandemics, endometriosis patients knew what it is to spend long periods by ourselves locked in and with nowhere to go. We experience painful flare-ups that keep us away from work or any social activity. Uncomfortable symptoms force us to miss out on fun plans and make us stay indoors. Recovering from extensive and multiple surgeries means we spend weeks bed-bound, all by ourselves, as our bodies slowly go back to some version of “normal”.
On other occasions we are actually out, surrounded by people, and all it takes is an odd feeling in our abdomen. We tense up just a little. Everyone else around us continues to chat, gesticulating with their bodies that don’t hurt, or insides that don’t feel like they're about to explode.
As patients, we know we are the odd ones out. No one around us has to deal with this daily. It's that familiar, isolating feeling, when we tell someone how we experience excruciating pain and heavy bleeding monthly, and feel completely invisible when they tell us about a bad period they "once had". Mentioning endometriosis to most people will be met with confusion or total ignorance. Having to explain how we can’t do something because of our physical health, is a draining exercise that sets us apart from everyone else.
Yet, feeling lonely is perfectly OK.
My lifelong experience with endometriosis allows me to say that feelings of loneliness and isolation are not foreign nor rare. In fact, it is perfectly alright to tear up or become choked up, struggling to express how this illness makes us feel.
There are days in which I feel so alone and misunderstood, that I wonder whether I am simply, broken. It doesn't help that whenever I delay work to favor rest, or I say no to a particular request, I feel like I'm reluctantly separating myself from the rest. I struggle with guilt, and end up feeding that version of myself that feels incredibly lonely way too often.
Yet all it takes is some mental clarity and many deep breaths, to realize that what is fractured is the world. What needs fixing are the imperfect medical procedures that don't cure our disease. What requires fine-tuning are other people’s mentalities. There needs to be more research into an illness that affects millions. Health professionals must stop dismissing us in a way that makes us feel unheard and terribly lonely.
How do I live with my feelings of loneliness?
It's OK to not be OK. Accepting that endometriosis affects more than our internal organs, is the biggest form of self-care. Like Elizabeth Gilbert once said, taking care of my mental health is a full-time job.1 So, whenever I feel isolated I tell myself I am allowed to feel this way, because it is entirely natural.
Then, I reach for the things that make me feel good. This may mean reading books that I particularly connect with, or re-watching a favorite film. Any small gestures that feel nurturing, will keep me afloat. Additionally, there is something quite wonderful about indulging in the things we can do only by ourselves. Let’s face it, not everyone wants to watch Captain America’s muscles tense whilst holding a helicopter for the eleventh time.
Endometriosis is a disease that affects everything, including our own identities and feelings of self-worth. The world continues to revolve around us, friends carry on doing things we can only hope we'll do one day. It is OK to feel like the odd one out.
Just remember that behind you, there will be so many of us saying “I get it, sister”.
Have you heard about the new tampon technology currently being tested to detect endometriosis?