I’ve been in an abusive relationship for the past twelve years. It’s not something I can leave. This relationship is with my body, which is attacking itself. I have Auto Immune disease.
The definition of Auto Immune is when the body produces antibodies that attack healthy cells tissue or it’s own immune system. AI, as it is called, is a canopy term for many different diseases ranging from Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Graves, Hashimotos, Fibromyalgia, Diabetes, Celiac, Scleroderma, and many others. Most of these diseases can be identified by severe inflammation. Often the disease attacks the body’s muscles, nerve receptors, or organs and these symptoms are naked to the eye.
I don’t talk about my AI much. People hold it against you, won’t hire you, don’t want to be around you when you are sick. And as I’ve been told hundreds of times, I don’t “look sick”. That is mostly owed to Mac makeup BB cream. Some days I feel normal. On those days I wake up and feel like I’ve been set free. I want to go spinning, for a hike, or a run. I want to do absolutely everything. At the very least, I feel like I can tackle all the tasks on my to do list. At best, I think I could manage a 12-hour day on set or in an office. But on bad days, it feels like I’ve been hit by a Mack Truck and dragged for a few miles. It is best described like the day after having run a marathon…plus the flu. I am like a Teddy Ruxpin doll that suddenly has its batteries yanked out. It is difficult to get out of bed, everything aches, sunlight hurts and some days I vomit for hours.
Since there isn’t usually a visible trace of my illness, it isn’t apparent to others that I live with this disease. Only a few who are close to me know the extent. The sheer exhaustion I face daily from Fibromyalgia stops me from performing as much as I’d like to. Some days it stops me from showering. I’m not being precious about not eating bread at a restaurant. Gluten can cause an alopecia outbreak where I can lose clumps of hair. I don’t turn down going to festivals like Coachella to be a drag, but because I have Meniere’s disease, which is causing me vertigo and, eventually deafness.
Some people don’t think there is anything wrong with me: that it’s in my head or that I’m faking it. I spend most of my time faking feeling normal so that I can go about my day. They want me to prove my illness – show them a scar, a wound, or an x ray. Sini Anderson, documentary filmmaker and director of the acclaimed film about Kathleen Hanna, The Punk Singer, battles the same issue. Sini has suffered from Lyme disease for over eleven years.
I was told by several doctors that there was nothing wrong with me and that from looking at my family history, I would benefit from seeing a good psychiatrist and or therapist. I also had a nurse practitioner who was incredible and so helpful and she’s the one who initially figured it out.
My autoimmune has granted me countless hours in hospital waiting rooms. Doctors have tried a myriad of pills, painkillers, and even IV drips of colloidal silver and hydrochloric acid. Most of that has managed to drain my bank account and give me a bleeding ulcer. It seemed the more confused the doctors would get, the more extreme the treatment. Sini’s treatments have also been aggressive:
I did heavy-duty oral antibiotic and anti malarial medications for about 13 months, I saw improvements with some symptoms and deterioration with others. It became clear that I was not going to get better and that the infection was causing brain damage. My doctor conferenced with another doctor …and they agreed a port placed inside the body leading to the heart should be placed so I could receive daily high doses of IV antibiotics. I did that for about 5 months. I’ve tried most things. Cannabinoid oil is not something I’ve done with enough consistency to determine it’s usefulness for me. I do know that it’s helping a lot of people.
With all the medicines shoved prescribed to me, all the needles I’ve been poked and prodded by, strangely medical marijuana is one that Western medicine doctors often told me to steer clear of. I’ve never been a big cannabis smoker, however with the popularity of cannabinoid oil being used to treat cancer and other diseases, this might be a new door opened for people who suffer from AI and other pain related diseases.
While Opioid painkillers certainly dull the pain fast, the stress they leave on the body, not to mention the stomach lining, is a major draw back. One of the purported benefits of cannabis oil is that it can release pleasure hormones and relax the mind, which helps with stress and pain levels. In fact cannabinoids have been known to help both the central nervous system and the immune system. It is also known to be helpful in inflammation, which is a general side effect of the nerve pain of Fibromyalgia and other related AI pain diseases. It helps with sleep, which is imperative for those who have pain related diseases. Sleep is restorative and can make the difference in healing or not. It’s even been known to help patients suffering from the elusive Lyme disease. Yet doctors are still not open to prescribing cannabinoids to patients –even when studies show if helps cancer patients.
After 12 years, you would think I had accepted my fate, but I have not. My type A brain argues with me constantly, telling me to get up and not give into it. Telling me that life is passing me by while I lay still, recuperating. I see women juggling kids and jobs and houses and dogs. I miss out on meetings, networking, events, shows, parties, opportunities, time spent with loved ones. But without my body, I can do nothing. I am partnered with it and have to bargain with it. I’ve had to slow down, change my city style pace. Some days I have to budget my energy because I have an expiration time and I know I will shut off at a certain point. My self-care has worn on relationships and even ended some. What’s more is that it makes it difficult to excel in my field. I berate myself when I see others accomplishing the goals that seem out of reach for me with my one step forward, two steps back pace. I must insist to myself that I am not my job to keep my anxiety in check.
Sini recognizes the same frustrations, especially as a woman with a career in the film industry:
It affects every aspect of my life and art. It’s incredibly risky for me to be a director who is out about my illness. We already have a practically impossible time getting hired in this male dominated business. If you are someone with chronic illness and you’re out about that, you’re kind of shooting yourself in the foot. I’ve already been on the fringes of popular culture for so long and I’ve been an activist my entire adult life, so I can do it, I’m out about it.
Perhaps being “out” about auto immune and chronic pain is the answer. For a disease that sidelines more than 7% of the population, if more people spoke out about it, maybe more treatments and cures would be readily available and thousands wouldn’t have to be misdiagnosed or suffer in silence. Perhaps Cannabinoids would be officially approved as treatment or more studies would be done to find a cure for these elusive diseases. Until the stigma for these bullying, abusive syndromes is addressed, we are left to battle it in the shadows.