Chronically Ill and Chronically A Woman
Breath Deep. Relax. Meditate. Stretch. Release your stress.
Sounds like I am attending a yoga class, right? This is the advice I received from my doctor regarding my chronic full body pain. My story isn’t unlike many shared by women all over the world but I’ll tell it anyway. At 19 I was awakened out of my sleep by a deep pain in my shoulders and arms. A week later I lost consciousness and laid on my bathroom floor for hours until I was found. A month later I was lying in bed and unknown to me I experienced my first seizure. I say unknown to me because one minute I was talking and the next minute I feel myself shaking and unable to talk but when it was over I recounted it as a sec and found out it lasted almost a minute. At that point I decided maybe I would see a doctor and make sure nothing was going on. This was when I realized that my gender influenced the care I receive. I sat in that doctor’s office being asked repeatedly if there was a chance I was pregnant, HOW MANY kids I have (not IF I had any), or if I could have contracted an STD and despite responding in the negative I was still given test after test to confirm what I had already stated and my original reason for coming in had yet to be addressed. It was also in that same visit that I realized the negative impact being honest with my health care provider could have. In giving my history, I mentioned my prior gymnastic experience, full time job, and relationship and in that brief conversation it was decided I was perfectly healthy just experiencing after effects of my years as an athlete (they said it was a muscle spasm, as though I wouldn’t know what that would feel like after 15+ years of athletics), and that as a woman I don’t handle stress well and so it manifested as my other symptoms.
Feeling defeated I left with no answers and a recommendation for a therapist. BULL SHIT, RIGHT? No CAT scan, no X-ray, not a single diagnostic test except those related to my sexual health because of course the only real issue was if I was a teen parent or carrying some disease I could spread. Furious and frustrated that I was being reduced to my sexual organs and stereotyped as an “emotional woman” I realized doctors may be of no help to me. This would have just been a bad day if this was an isolated incident but over the next 5 years I would have over 10 ER visits and the consistent response of,” your too stressed and need a therapist,” all while my symptoms progressed from my shoulders and seizures to loss of feeling in my legs, excruciating back pain, joint swelling, and migraines. It wasn’t until I tore a ligament in my knee after falling on icy stairs that I was informed that not only was the pain not” in my mind” but that I in fact had Degenerative Joint Disease, Fibromyalgia, Nerve damage, and sciatica. After the initial shock came the relief of finally having an answer but it was short lived.
At my first appointment with my rheumatologist my very male doctor told me that meds would help my pain but before he would prescribe them I should SEE A THERAPIST because women don’t cope with pain well. I couldn’t believe it! Even with a solid diagnosis I was still being told women who deal with menstrual pain, birth children, and cope with more stress a day than most men do in a month can’t handle it well so I should get my mind treated BEFORE my body. I stormed out of that office and he in turn filled out my disability paperwork and instructed his assistant not to schedule me again because I was non-compliant! Over the next few years I retreated into myself, self-medicating, using ER’s when needed and in turn letting my disorders go unchecked which resulted in addictive behaviors, medication misuse, and further damage to my body all because I was afraid to go to a doctor again and be told I was mentally weak. As a healthcare worker I listened as doctors did the same to women all over this country, having hall conversations calling women whiners, wrote in permanent health records that women with real issues don’t know how to cope, and taught new generations of doctors that when women say they have pain instead of treating them they should first test her limits and wait a little longer before giving medicine because it may be “all in her head”. Even today as I received yet another diagnosis I hesitate to inform my doctor when things get bad because I don’t want to appear as drug seeking or mentally weak things I know are untrue but know can affect the help they give me. Every day you hear of women dying in child birth after being ignored when they say something is wrong, diseases going unchecked and yet the medical climate stays the same.
To be a woman and be chronically ill is to have 2 disorders and both can go untreated because of biases that are costing women all over the world their quality of life and sometimes their actual lives. And I for one have had it!!