AFter six years of being sick, you would think it gets easier to hear a doctor tell me “I don’t know.” Or to hear them ask if I’ve been to a psychiatrist. The answer is yes – I’m one of the most therapied people I’ve ever met, but the relevance of that fact to the rest of my symptoms is minimal.
It’s a story you hear over and over again in the community of people who suffer from debilatating chronic illness. Go to doctor. Go to specialist. Go to another specialist. Be told that maybe what you’re feeling is a result of psychological and not physiological isses. Go to therapy. Try as hard as you can to make your body feel better with the power of positive thinking. Fail. Question your own ideas of reality. Lose trust in yourself. Spiral into helplessness. Still feel sick and now incapable of ever getting better. Fall out of medical and psychiatric care. Retreat from life because you’re tired of explaining yourself. The list goes on.
In a way, I’m glad my neurological symptoms flared up so extremely last month. Not being able to talk or walk and watching my body go through uncontrollable tremors actually has me feeling the sanest I’ve felt in so long. As I go through relapse and remissions and flare-ups over and over again, I start to ask myself if I’m making my symptoms happen. I wonder if there’s some part of me that needs that kind of attention. But I realize now that there is no part of me that wants to be ill. My life as a filmmaker and an influencer gives me plenty of attention – attention in recognition of my hard work and my abilities. Not pity for a body that won’t function.
So as I sat across from a neurologist who answered “I don’t know” to questions about my immobility, questions about my speech issues, questions about why my brain feels like it’s on fire so often finally didn’t hear him saying, “You’re making this up.” I heard the words of a quitter. I heard the words of someone lacking compassion and empathy in a job that decides how well someone lives or doesn’t. I heard the issue on the other side of the table instead of feeling inadequate again.
We grow up with this idea that doctors are infallible. We are taught to cater to their opinions and to accept whatever they say as gospel. If there is anything I can tell you from $75K in medical bills over six years and contact with a dozen or more specialists, it is that doctors are NOT infallible. They do NOT know your body better than you do. I can tell you that psychosomatic is most often a cop-out diagnosis from an overworked or unimaginative professional.
Yes, I’m angry. I’m angry for myself and the psychological stress of second guessing every pain in my body and every bout of inability. I’m angry for the hundreds of women and men who every day walk into a doctor’s office and are dismissed out of hand. I’m angry that I’ve met maybe one or two doctors with the kind of time and moral center it takes to stick with a patient until they’re on their way to long-term wellness. I’m angry that so many people don’t understand how exhausting it is to have to put your life on hold while you wait six months for an appointment with a specialist who will listen.
Most of all, I’m grateful that I have advocates in my life who have helped me continue the unbelievably daunting task of getting a diagnosis. I think of the people I’ve met in chat rooms, in waiting rooms, in groups or online who are alone in this fight and outgunned by a health care system that encourages bandaids instead of lasting change. My mother, my husband and my family have never once questioned my desire to get better. They’ve never made me feel lazy for being sick. They understand that when I am well, I am a flourishing, busy person. They understand that more than anything I just want a chance to be that person for the majority of my days.
Please, if you have people in your life who suffer from illness, be an advocate for them. Sometimes that means calling the doctor when they’re too tired to make appointments themselves. It means keeping in contact when they’re too sick to initiate it on their end. It means accepting that they know their body better than you do. If they say they don’t feel good, or something is wrong, listen. When you can, make the medical professionals in their life listen, too. Little by little maybe we can all chip away at the walls the chronically ill are forced to hide behind. Thank you for reading. Share with the people in your life who need to hear they’re not alone or how they can take care of those who need someone.