Looking at me, you’re likely to see exactly what the medical professionals from my past did. A bright, clear complexion, and a face that is too often described as “wholesome” for me to leave my ID at home. I look fit; sometimes I look great, even to myself. Dark circles, a disability parking pass and hand tremors are the only hints you’ll find of an invisible illness.
So many women struggle with chronic illness that is left untreated. As a child, the school nurse hated me for being a faker. I was always told I was “wallowing in it” and given a condescending pat on my metaphorically pigtailed head. Now I’m 22 years old, and this year I got a diagnosis that can help explain a lifetime of symptoms. It took me eight whole years from the time I actively started pursuing a diagnosis until the resulting one earlier on this year. The mind boggling thing about this is that for mine and many conditions that are overwhelmingly experienced by women, that’s considered relatively quickly. Chronic and rare diseases can take years of testing and deliberation by a whole team of specialists.
I can’t remember how it all started for me and I am not here to lament my own specific problems. I’m here to be relatable, so that you know you’re not the only person who gets a diagnosis of “virus” after 10 minutes in the doctor’s office, on your fifteenth visit for the same problem that year. If the problem is our gender’s inherent perceived weakness, I wonder, why exactly are women not getting the help they need? The “medically weak” should receive help and never have scorn directed at them. Even from this misguided, sexist standpoint the argument doesn’t make an ounce of sense.
For example, ADHD, one of the conditions I advocated to be tested for by a professional as a teenager, is often diagnosed in boys while they are still in elementary and middle school. For girls, high school to college is more likely to be the life stage where you discover this problem. I was told boys are “louder” about it by a well-meaning nurse practitioner once. I firmly believe girls can speak for themselves, but are often brushed off and the warning signs are blamed on a bad mood, s***y attitude, or being a brat.
An ADHD diagnosis was one of my first victories in the medical arena, after two years full of many lost battles. It seemed no matter where I turned as a teenager, more often than not the doctor only spoke directly to my guardian. I was not asked questions personally, but they miraculously would come up with “faker, probably being bullied in school,” after hearing about five sentences.
No one likes being called a liar for seeking help, and that was when I began to realize women need to help advocate for each other when it comes to chronic medical problems. Bring your sister to your appointment if you’re comfortable. Bring anyone you are comfortable with, even as an adult. This is the point: I’d like to stress the most, talk to people about your problems when they don’t go away, even if you think they’re “normal.” For example, when I couldn’t walk for more than ten steps at a time without collapsing, I still didn’t even realize I was “actually” sick. Part of me still believed I was lazy, or doing it to get out of something. The same thing happened when I had my rotator cuff hanging by a thread for two and a half years before finally convincing my doctor I needed surgery. Sorry to be graphic, but I believe it illustrates that I am either exceptionally naive or that I had been turned away when asking for help so often, I learned to stop asking.
If you feel you have been brushed off by the medical community, I urge you to write down your symptoms in as simple of terms as you can. I learned I have fibromyalgia after doing this and realizing I had over 80 symptoms. At the time, I thought I was mostly just whining. Then I discussed I had so many symptoms at one time, and my mother told me that had to mean something was wrong.
Don’t let yourself or other women fall victim to this problem. It also helps to not list symptoms when you speak to doctors, or rather not only symptoms. Talk about what your symptoms prevent you from doing, or how else they interfere with your life. This is the best way to help ensure these symptoms stop causing problems and start being managed properly.