Like the rest of the Western world I’ve recently become a bit obsessed with the Netflix series Stanger Things. There’s so much to love about the show. It features an incredible cast and great writing that plays really cleverly with references to the great sci fi and horror films of the 80’s. The show is crafted like a great pop song, just familiar enough to trick your brain into thinking you’ve heard it before until you are hooked. For me the sense of deja vu runs much deeper than the obvious homages to films like E.T. and Stand By Me.
The monster in Stranger Things lives and feeds in a world called the Upside Down. A dark and cold place mirroring the world they inhabit that exists just below the surface even though they can’t see it. Will Byers is trapped there but can hear and communicate with his mum who then everyone thinks that she has gone off the deep end for believing that Will is still there with her. This is the part that really hit home for me because it is an incredibly apt depiction of what it is like to live with chronic illness. The part of you that everyone sees is in the real world yet you feel trapped someplace else and it is dark and terrifying.
I was diagnosed with an auto-immune thyroid disorder called Hashimoto’s Disease three long years ago although in reality I have probably been sick much longer than that. Sometime after my daughter was born six years ago I began sleeping for entire weekends because I was too sore and depressed to move. I was unhappy at work and unhappy in my marriage. I drank too much becuse I felt like crap all the time and the prosecco took the edge off the constant dull aching in my joints. I’d work until I collapsed. Minor illnesses like colds would drag on for months. I went to the doctor but the assumption was always that I was tired because I was a working mother, I was too hard on myself, I had the post-partum depression… So I went to counselling and I took the antibiotics and I treated the syptoms and I fell deeper and deeper into the hole. You see, I was ashamed that I felt so crappy. I had everything going for me, why couldn’t I be happy? There must be something wrong with me, I thought. HOW DARE I NOT BE HAPPY WHEN THERE ARE PEOPLE WHO LIVE THROUGH GENOCIDE AND WAR AND STARVATION AND FOR GODS SAKE SUCK IT UP YOU SPOILT WOMAN. But I wasn’t unhappy because I was spoiled or bad or depressed. I was unhappy because I was sick. I was depressed because my body wasn’t making the hormones that my cells needed to function properly. I KNEW that something was wrong with me but when I asked for help I was made to feel like I was paranoid, crazy and spoiled. How could I expect to feel well when I was spinning so many plates? Burnout. Depression. Affluenza. Needing to “have it all”. Those were my real problems according to my doctors. Only they weren’t… I took another three years of suffering before I finally cracked it. I was in a new relationship and full of hope. We’d moved house but I elected to keep my daughter at the same Montessori School she’d attended the two years previous. The commute was 45 minutes each way and it was killing me. I would spend most of her school day sleeping and when I got home with her in the afternoons I would turn on the tv for her so I could retreat to my room and cry hot tears of shame and frustration for how utterly exhausted and useless I felt. I couldn’t work. I couldn’t think. My memory was suffering. I found a nutritionist. I changed GPs. I asked for my thryroid to be tested again. I got a diagnosis and I started medication. I got better and I was well enough to have a much longed for second child. I made my way out of the dark world of my Upside Down. That’s not to say my life or health are perfect. I’m struggling with another complex heath problem that I will need further tests and more specialist appointments to confirm a diagnosis. Some days I still need to sleep all day or take myself off for a cry (or both) but I know now that they are just bad days, not a bad life, and that I am not a bad person for being unhappy when it happens.
If I could go back in time and tell myself something today it would be this:
If you feel like you are living part of your life in the Upside Down don’t give up just because somebody tells you it isn’t reasonable for you to expect to feel good in these demanding times. Doctors treat symptoms, only YOU know the truth about how you feel and who you are so don’t let yourself be fobbed off or made to feel crazy for wanting to be well. Most of all don’t ever be ashamed of being poorly. Keep looking for answers. Change doctors if you need to. Get second opinions. Explore other treatment options. Do your own research.
Be your own search and rescue team.
You deserve to be happy even if it means eating beans on toast for two months to save up enough cash to see a private specialist who will really listen to you.
Don’t give up.