How Connecting With People With the Same Condition Has Helped Me
When I was a teenager, nobody understood why I was feeling so sick. Not my doctors, not my family, not my friends, and least of all me. I wasn’t given a diagnosis by anyone. For all intents and purposes: I was healthy. During my teenage years, I refused to see myself as a sick person. I just wanted to go to school, be with my friends, go out and chase the dreams I had about my future. I pretended to myself I was fine, even though deep-down I knew I wasn’t.
Sure, I had to skip quite a lot of school days, parties and birthdays, but in my mind I always thought, “Doctors haven’t found anything, so starting tomorrow I’ll be fine again. Or next month. Next year at the very latest.” I continued with that approach all the way through university…Until my body completely shut down through severe thyroid problems, followed two years ago by Meniere’s disease which rendered me completely bed-bound.
Three months after first becoming ill from Meniere’s Disease, I felt good enough to start a new job for a couple hours a week. My body disagreed. One month into it, I experienced a severe episode of vertigo at work and had to be brought home. I was never able to go back without vertigo hitting me hard in the face. So soon after, I quit.
It was then that I finally started to listen to my body and knew it was time to accept that I was never going to be able to live the life I wanted to lead. It was time to completely change my frame of mind. I realized I wasn’t going to suddenly heal from a disease some people still doubted was real,particularly in my country of the Netherlands where it is still not an officially accepted diagnosis, but one that was making me feel very sick all the same. I had caused myself a world of hurt by ignoring the fact that whilst a diagnosis had never been given to me, my body was actually quite sick, and was getting even sicker. I realized I had been exploiting my body for almost 15 years.
That’s when, after finally realizing that my body is a force I have to reckon with, no matter how much I loathe it, I fell into a depression. I didn’t want to accept any of it. I wanted good enough health to chase after my dreams. I wanted that family. I wanted that social life. I wanted that career. I wanted to travel the world. I didn’t want to feel so sick every day. I grieved for a life that had been so close, but was now so far away – even though in actual fact it had never been close at all. I lost all hope.
I was left to pick up the broken pieces that was me and I had to grieve the life I knew I was never going to have. One day during that depression a year and a half ago, I was so done. Crying, I Googled, “Why am I so sad?”
I didn’t even Google my illnesses, I still wanted nothing to do with them, but I did google those five simple words. The articles that came up ranged from “everybody is sad sometimes” to explaining the brain chemicals involved. From there, I got onto websites where people who were struggling with the same things as me shared their stories.
From the very moment I Googled those words, I started to mentally heal. I have amazing parents and brilliant close family and friends who are incredibly supportive. But, I can still feel so alone when symptoms suddenly ruin our plans and the guilt is overwhelming, when my anxiety keeps me up at night, or when I feel upset about what my life is like these days. Thankfully, most of my loved ones will never fully understand what that is like.
Yet, finding people who I don’t personally know but who have the same health issues as me, who struggle with the same things and who have the exact same responses to symptoms has been eye-opening. I can’t quite say how much it has benefited me. It has helped me understand my emotions better, it has helped me understand my diseases better, it has helped me feel so much less alone. It has helped me get out of my depression.
Throughout the years, I had been so busy not accepting that I was sick that I had also kept far away from articles, books and sites on my conditions. It was my mum who did research and my mum who read the books on self-care that I should have been reading. But I ignored it all. If only I had realized the help that communities like this one could have brought me. But I wasn’t ready.
Now I finally am. I am sick and I am facing the fact that because of that my life isn’t typical. My life is, in fact, quite unique. It may not be as I had long envisioned it, but even this life has brought me gifts, even though some days I see them more clearly than others.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.
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