I Wasn't Believed When I Became Sick. Now Doctors Think I Look Too 'Well.'

Like many fellow “Zebras” or Ehlers-Danlos syndrome (EDS) patients, my diagnostic odyssey took around 15 years — from initial physical symptom onset to a formal diagnosis at age 35 last February. In those 15 years, I was repeatedly disbelieved, discredited, belittled, patronized, and gaslighted by the medical professionals who were supposed to be caring for me and helping me. Instead of helping me, they subjected me to unforgivable levels of iatrogenic harm — harm caused by the medical profession. Their lack of clinical knowledge, inability to manage complex patients, and downright ignorance delayed my diagnosis for years on end. By blaming my “mental health” for everything I experienced, they absolved themselves of any responsibility for finding out what was happening with my body.  For years, doctors didn’t believe that anything was actually physically “wrong” with me, and they repeatedly told me, “It’s all in your head.” My doctors told me that what I perceived were “physical” problems were categorically attributed to “psychological causes” as aftereffects of severe childhood abuse and trauma.

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

I received a plethora of psychiatric misdiagnoses, many of which still remain in my medical records — still haunting my ability to effectively obtain crucial medical treatment in acute physical health crises. I fought numerous times to get the hospital to remove “neurotic depression” from my hospital notes.

I now have a personal interest in several things — the diagnostic journey, medically-induced post-traumatic stress disorder (PTSD) from the diagnostic journey, communication skills used in healthcare settings, opinions on the presenting complaint, the difference a diagnosis makes in a person’s life, stages of chronic illness identity, and the adaptations a patient may make in learning to self-manage following a correct medical diagnosis. I continue to do what I can in terms of patient advocacy and educating medical professionals about complex rare illnesses.

However, the years of iatrogenic harm caused by my doctors’ medical gaslighting and invalidation, numerous misdiagnoses, the spirals in my physical and emotional health, and the mismanagement of my case, it feels like I’ve come full circle. I say that I’ve come full circle because I’ve gone from not being believed to be sick and having my physical concerns attributed to my mental health to not being believed to be sick because I look too well!

Following my official EDS diagnosis, I have become well-read — knowledgeable and proficient in self-care and self-management strategies. Even though I have EDS as well as complex PTSD and obsessive-compulsive disorder (OCD), I take my self-care and holistic wellness regime so seriously every single day and therefore look so well that these days, no doctor believes how unwell I actually am beneath the façade of the calm, glowing, happy, healthy, fit exterior I proudly wear on the outside.

I am still not believed when I share how unwell I am physically because now I look too well. I don’t look “sick,” but that doesn’t mean I’m not living with health conditions.