a love letter to instagram
Hi. It's been a while, I know.
The past year had been focused soley on surviving. Turns out, the surgery I had received was one that complicated things further- causing my endo to grow back worse than before. This resulted in a lot of change in my life, hence the lack of writing.
I've been pouring my soul into my online endo community. I made an Instagram in hopes of finding people like me, where we could build a safe space. Being sick is isolating. Most everyone in my day to day life has pretty much no clue what I am going through. They empathize, they help out, and they love me through all of the pain. But they just don't get it.
Going online, and finding people with stories like mine, has been so healing. They know exactly how I feel. They know the pain, the masking, the hurt. And being able to chat daily with these people has given me more support than I knew was possible.
I was excited to get a diagnosis. I had suffered for so long and it was life changing to be able to put a word to what I have been going through. It is validating. But after getting the diagnosis, I realized- not much changes. There are no new resources made available to me. There is no direction on what to do next. Getting a diagnosis kind of just meant people have to believe me now. I got a number of apologies after getting diagnosed, and I deserved them. People need to learn to believe one another when we say we are suffering. And I have believers now, but only since I was validated by someone else.
That is a bit disheartening. I am so thankful for who helped me get a diagnosis. For who believed me when there was no proof but my tears. And online, I don't have to prove a single thing to this community. They know me, they support me through it all.
Being sick has taught me so much. But mainly, it showed me all the people in my life who no longer fit there. I have had to grow, and fast. I have had to be stronger than I have ever wanted to be. And that forces me to see things differently than others. I have outgrown so many people. And with sickness being alienating itself, I am left with a very small circle.
But I don't mind. In fact, that is all I want. I will no longer accept crumbs from people when I know I deserve the cake (reference to Women Don't Owe You Pretty by Florence Given). When I have seen the type of friend I am to myself, my standards shot up. If I can care for and love myself through all of the horrible hurt I go through, then I know it is possible for other to as well. And if they choose time and time again to let me down, then I choose to move on.
With all that I go through, I genuinely do not have the energy to beg to be loved. No one should ever have to. And although I am not face to face with my community, not once have I had to ask for support. Not once to I have to beg for help or love. We automatically support one another, because we are a mirror of experiences.
"The internet has taught me more about my illness than any doctor ever has."
Along with that, the internet has taught me more about friendship and companionship than anyone ever has. And I intend to nurture this part of my life. It is real, and it is the biggest support system I will ever get.
