How Our Culture Is Still Hungover From Diagnosing Women With Hysteria

I recently began comparing my experience with illness and getting diagnosed for an ongoing court case in which I am attempting to represent myself. I have had to learn a lot about the human body and medicine, reading studies and papers which would have previously been completely unintelligible to me. I have had to compile information about myself, my past, my family history. I have had to track down people and records; which although about my body, often getting access to has been near impossible.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have then had to present my findings to consultant after consultant, trying to diplomatically steer them to the possibility that, although I am “young,” I could have a certain illness. Beginning with the most likely, chipping away at the possibilities. Blood tests, scans and procedures have either crossed names off the seemingly infinite list or added a new term to the diagnosis. Just as I feel I am making progress new, unexpected symptoms pop up to complicate things further. Having entered into the realm of rare disease, this task of getting diagnosed has seemed mammoth.

A couple weeks ago I visited a rheumatologist armed with a five page document presenting my case. A folder of supporting material: scans, doctors letters, hospital admissions – and I was ready for battle. During my 26 years of unusual health and four years of debilitating, life-threatening illness, I have experienced many battles of this kind. As it seems, many of the healthcare professionals I have come into contact with don’t think young women get ill, especially women that look OK.

When I had a clot in my lung, my pain was not believed. I could feel the clot burrowing like a tunnel through my chest. After many emergency visits, begging and pleading with doctors, a CT scan confirmed what I could feel – a pulmonary embolism. Last year when a surgeon found parts of my womb growing in the wrong place (endometriosis), I thought of the numerous doctors who had convinced me for nine years that periods were just that painful.

And still, after a gastric emptying scan that confirms my stomach is paralyzed (gastroparesis) and two gastroenterologists confirming and treating me for this illness, I have been met with ignorance by a consultant in another department who told me the illness did not exist. My stories are not wholly unique and it seems there is cultural stigma around the health and pain of young women, possibly some hangover from the history of diagnosing females with hysteria.

But the appointment this Saturday was not a battle. I presented my information to an understanding, receptive listener. She could see that to get to this place, all other, more obvious causes for my multi-systemic symptoms had been ruled out. She read my five page document, gave me a thorough examination and a clinical diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS), previously known as EDS type 3. She also said a diagnosis of postural orthostatic tachycardia syndrome (POTs) was likely and has recommended the name of a cardiologist who could help with this. It was simple and easy – and it felt too easy. Afterwards I felt as though I had left my body, or was somehow a light, fuzzy mist around myself. I was there, but not quite there.

On the first page of my five page “health document,” underneath my name, date of birth and basic details, I have a section called diagnosis, with the dates and names of each new addition to this list:

Diagnosis:

28/11/14: Pulmonary embolism, Factor V Leiden Deficiency.

27/11/16: Endometriosis.

29/11/16: Reduced gut motility with gastroparesis, slow transit through the small bowel, constipation, globally dilated small bowel as noted on gynecological laparoscopy.

20/12/16: Syrinx on spine.

On Saturday I was able to add:

10/02/18: Hypermobile Ehlers-Danlos syndrome, clinical diagnosis.

I phoned my mother to tell her the diagnosis and she was heartbroken. But I didn’t feel sad or angry as I had expected to. As hEDS is a genetic condition, it is something that has always been with me. It is not an invader. It is the reason I walked at 18 months, the reason I needed a pencil grip, it is how I was able to impress my friends with my flexibility at school. It is why I have big eyes and soft skin. It has confirmed that the excruciating pain in my back that has seen me hospitalized was, as I suspected spinal disc subluxation (partial dislocation). I feel it is part of who I am.

In my experience, being ill and in pain is significantly worse when you don’t know what’s causing it. The part before diagnosis can be frankly traumatizing. The stress of which can significantly worsen your overall condition. But now that I have a name for the problems I am are facing and I have become part of a community. The walls around me have been lifted and I no longer feel quite as isolated.

The rheumatologist who diagnosed me has begun me on a road of lifetime holistic treatment. They also believe I am eligible for a three week intensive physiotherapy hospital based course, in which, with others you learn all you can about your body and how to live well. Having a mostly invisible illness or disability will always have extreme challenges in a society that seems to correlate how someone looks with how they must feel. But if I am to return to the analogy of the court case, I suppose the case is ongoing, only I now have an expert legal team and for now the jury is on my side.

Getty Image by KatarzynaBialasiewicz