This afternoon, I read “Can New Research Validate Women’s Pain,” an article by Jordan Rosenfeld about new research into why women are so much more likely to experience autoimmune disease than men. For context, Rosenfeld explains some of the challenges that women face in coping with and even being diagnosed with autoimmune diseases.
Even more, the article discussed how long it takes women to be diagnosed. Doctors shrug their shoulders and dismiss patients’ symptoms, ignoring or disbelieving their pain, their fatigue, their brain fog, telling them it’s normal to be so tired or prescribing them antidepressants.
Still worse these diseases are largely ignored by the medical industry as a whole. Despite their prevalence and far reaching impact, the research and treatment options are minimal.
The result is that women feel crazy.
They suffer for years with no help, no direction, and sometimes worse, no compassion. I have a hard time believe that if the sufferers were mostly men instead of women, serious illnesses such as Lupus and Hashimoto’s wouldn’t get more attention and funding.
Frankly, it’s the medical version of gaslighting.
Rosenfeld’s article tells a couple of stories, shares a few statistics, but is mostly a review of recent science, describing in-depth the chromosomal and genetic research that is helping scientists understand why women suffer from these diseases far more than men. I’m not a doctor or a scientist, so I had to read these paragraphs a few times to understand the implications. I tell you this only to say that the article was mostly dry, a little dense, and ordinarily wouldn’t fit my criteria for a moving or inspiring piece of journalism.
And yet here I am, a few hours later, unable to focus on anything else and struggling not to cry in public. The slightest increase in journalistic coverage of this phenomenon feels like the health version of the #metoo campaign.
I have two autoimmune diseases: Hashimoto’s, which attacks my thyroid, and Lyme disease, which attacks damn near everything. On top of that, I was born with a genetic degenerative neurological disease called Charcot-Marie-Tooth (CMT). It’s not autoimmune, but its impact feels similar in a number of ways: there are few treatments and no cure; symptoms are disparate and come in waves; doctors are ignorant or dismissive; and people are disbelieving or pitying.
The result of living with these three diseases is that I feel constantly conflicted.
I am adamant about being communicative, sharing details, being honest and transparent about my experience because I think the stigma attached is immensely unfair and I feel a responsibility to do my part in fighting against it.
Yet at the same time, I constantly worry that I am being needy, weak, or melodramatic.
I am proud of my perseverance through it all. That I take my dozens of supplements and medications, eat my restrictive diet, continuously rebound from illnesses, injuries, and flare-ups. And yet, I am terrified of being defined by my illness, hardship, or struggle – pigeonholed by the bad stuff in my life. This was doubly bad when my health declined suddenly while I was still recovering from my divorce. I was terrified by the idea that the sum total of my life would be that I survived a whole lot of shit.
I want more. I want to be more, be defined by more. Sure, I want the credit for my resilience, but also for my joy, intelligence, passion, drive, empathy. I don’t want any of it glossed over. Which, in the age of social media, sensationalized news, buzzfeed listicles, Instagram stories, and all the rest, seems damn near impossible.
There is immense pressure to be summed up by a clever tagline, a 250 character profile description, an easily understood category.
But in my experience, owning, honoring, and expressing all of me is my only path to happiness.
That’s why these dismissive medical experiences are so devastating. While you’re desperately trying to cope with acute symptoms – pain, fatigue, memory loss, and more – you’re also essentially being called a liar. A supposed expert, someone you’re supposed to trust, respect, and honor is telling you that you don’t understand your own body, your own self. It throws you off kilter. It shakes you to your core. And it makes you doubt damn near everything.
When it comes to my health, I have been doubted by medical professionals, work colleagues or bosses, friends, and lovers far more times than I can count. In every scenario, the reality of my situation has been proven – immediately, within days, or in some cases years later. I have been vindicated.
And yet the self doubt remains. It’s immensely difficult to shake off.
When I’m not doubting the existence of my symptoms, I’m often believing their severity is psychosomatic – the result of feminine hysteria, mental instability, or melodrama. Other times, I feel the health version of imposter syndrome, telling myself that because my own death is not imminent, I don’t deserve the right to make an issue of my health.
But here’s what I cling to, what I remind myself as often as I possibly can: I’ve made it through because I haven’t kept quiet.
Listening to my gut and being persistent is why I have ultimately gotten the diagnoses and treatments that I’ve needed. Doctors told me, “Don’t worry! Everything is fine! You work full time and go to grad school at night. Of course you’re tired!” But I didn’t give up. I did research. Read blogs. Asked friends. Demanded more tests. And got second, third, fourth, and yes, fifth opinions.
Being present with the emotional struggle from my health is why I have been able to not just muddle through, but grow stronger and more compassionate. It takes constant practice and I am by no means an expert, but every time I allow myself to process my grief and anxiety, a weight is lifted. Suddenly, I am reminded of my own resilience – starkly aware that courage is not the absence of fear, but the ability to press forward in the face of it.
Continuously forcing myself to share my experience with others is why I have developed closer, deeper relationships with people whom I deeply respect and cherish. My vulnerability creates space for their own and the result is an authenticity and shared experience that superficial social media posts or banter over drinks cannot possibly match.
As I’ve grown more insistently honest about my health – with doctors, with myself, with the world – it has helped develop the strength to be similarly more honest about the rest of me too. My needs and wants, my fears and anxieties, and my hopes and dreams.
Perhaps the worst part of this tendency of the medical community to doubt women is that it causes us to doubt ourselves. In our health, in relationships, at work, with friends, in every aspect of our lives. We become less likely to fight back when we should, speak up when we want, and defend ourselves when we need.
To be clear, this isn’t an attempt to minimize, explain away, and present the sunny side of the impact of the medical community’s tendency to ignore women in general, and women with autoimmune disease in particular. In a sense, it’s a call to action.
For all the women out there in pain, suffering with their health, experiencing something similar, being dismissed, ignored, or demeaned by their doctors, loved ones, or employers, speak out and don’t stop.
When it scares you, shames you, exhausts you, or gaslights you, don’t stop.
Our only way out is by speaking up and speaking out over and over and over again.
You won’t get the help you need, the diagnosis you deserve, the support you’ve earned, or the peace of mind that is your right until you do. And those doctors, colleagues, and loved ones will never learn, evolve, or improve unless you do either.
Speak your truth and over time, let’s hope, the world will begin to finally listen.