Joce: Increasing Visibility of Invisible Illness
By Joce L.
In this powerfully insightful post, Joce details the journey to being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers Danlos Syndrome and explains how important it is for everyone to continue to advocate for themselves.
Misdiagnosed & Misunderstood
F45.1, somatic symptom disorder.
F50.02, anorexia nervosa, binging and purging subtype.
i grieve for the fifteen-year-old version of me who didn’t have an understanding of what these diagnoses meant for me, how they would follow me. i didn’t understand why or how having a mental health diagnosis would make it harder for me to seek care for an undiagnosed invisible illness and disability – until it happened to me.
hospitalized for the treatment of my eating disorder in a medical psychiatric unit at a children’s hospital, one of my few luxuries was that i had access to professionals from other departments within the hospital. i met with a pediatrician every week while being treated, who would review my nutrition records and do a quick physical exam. my vitals showed consistent orthostasis (meaning, when i sat up or stood up, my heart rate would sky rocket and my blood pressure would drop significantly.) as i nutritionally rehabilitated, my blood pressure started to stabilize, but my heart rate – not so much. even as i was stable nutritionally for months, my heart rate continued to jump when i sat up or stood up. i was unsteady on my feet, experienced persistent nausea when i tried to stand for more then a few minutes at a time, and often could feel my heart beating in my chest – hard and fast. i also frequently told doctors that it felt like my joints were “slipping out of place” when i sneezed too hard, it felt like my ribs “dislocated”, and my body constantly physically ached.
at first, my pediatrician told me that it was my body trying to catch up to the amount of nutritional rehabilitation it had undergone over the past few months. then, as time went on, and my symptoms persisted, she and my therapist sat me down for a group meeting and told me that “psychological factors can have an influence on our mental health.” this made sense to me. i didn’t question it, and i had no further testing.
when i was discharged from the hospital, somatic symptom disorder was listed under my diagnoses. upon looking it up, i read in an article, “the person’s reaction to the symptoms is not normal”, and somatic symptom disorder is diagnosed when a person is “excessively focused on a physical symptom or complaint. the person’s symptoms may not be attributed to any medical issue, but the person genuinely believes they are sick.”
the diagnosis followed me through my adolescent years. whenever i mentioned my symptoms to subsequent pediatricians, i would get a response along the lines of,
“i see you have a diagnosis listed here of somatic symptom disorder and an eating disorder. is that true?”
Seen & Heard
it wasn’t until i was eighteen and able to pursue adult care that i began to get the testing that i had needed all along. my new doctor first referred me to a cardiologist, who took my orthostatic vitals, noticed the significant orthostasis, and ordered an EKG. when the EKG came back normal, i was sent for a 30-day heart monitor. those results came back with big jumps in heart rate from minute to minute. he looked at me and said, “have you ever been told you might have postural orthostatic tachycardia syndrome (POTS)?” a few visits later, he had enough information to diagnose me with POTS, and noted that i was hyper-mobile, too. he sent a referral to a rheumatologist. the rheumatologist agreed, i was, in fact hyper-mobile. my joints extended far past their normal range of motion. i went through a few courses of physical therapy without much change.
by the time i was 22, i was finally referred to a geneticist. that visit changed the course of my life — i was diagnosed with ehlers danlos syndrome. i remember him telling me, “it is not all in your head. your symptoms are very real. i see this every day. you very clearly have a connective tissue disorder. the problem is in your genes, not in your mind.”
having my chronic pain validated for the first time in my life was a surreal experience. i think that moment was the first time i was able to see myself as a truly multi-faceted human being. i am a person with an eating disorder, but i am also a person with a disability. i am also an advocate, a friend, a caregiver, a student, an artist – and there are people who believe all of me.
subsequent visits to specialists revealed undiagnosed hip dysplasia and impingement that has probably been present since early childhood, gastrointestinal dysmotility, chronic migraines, and mast cell activation syndrome – all associated with ehlers danlos syndrome.
Adapting & Advocating
learning to adapt to my life after being diagnosed with chronic, incurable illnesses is not easy. i am learning how to listen to my body every day. in the aftermath of an eating disorder, i am often less tuned into my body than i need to be. i often push my body too hard and cause pain flare ups, i have trouble voicing my needs, and i have trouble advocating for accommodations. living with ehlers danlos syndrome and POTS means that i rely on medications every day to lower my heart rate, relax my muscles, and keep my pain levels low enough that i can function.
one of the hardest things about living with an invisible illness is that others can’t see that i am in pain every day. they don’t understand why i need the accommodations that i do. they see a young, healthy-appearing individual and tell me that i’m “too young”, “too pretty”, “too successful” to have a chronic illness. i am the youngest person in waiting rooms. my friends leave me out of plans because they don’t understand why i can only do certain activities and not others. some days i may use braces and mobility aids, and the next day, i may not use any at all. my graduate school calls my disability-related accommodations “requests”, because they do not understand that i need these accommodations just to be able to be at the same level as the rest of the able-bodied graduate students.
perhaps the hardest thing, though, has been coping with the distrust and medical trauma i live with from being tagged with a diagnosis that followed me and was a barrier to receiving the diagnosis and medical care that i desperately needed throughout all of my adolescence. i grieve the teen years that could have been spent much differently if i didn’t suffer from chronic pain and medical gaslighting throughout them. i grieve for my teenage self who at one point believed it was all in her head because a therapist told her it must be.
this disability pride month, i want to let anyone who is dealing with an invisible illness, an undiagnosed chronic illness, or medical gaslighting know that you are valid, you are seen, and you are worth care, treatment, and respect – regardless of whether you also have a mental health diagnosis. you deserve to be heard and taken seriously by medical professionals. if you are fighting for adequate treatment or diagnosis, i know how frustrating and how exhausting it is to advocate for yourself for basic human dignity. please do not stop advocating for yourself. rest when you need, take breaks – but do not stop. someone will hear you. they have to. surviving out of spite is a route of survival.
Joce L.
(any pronouns)
Joce is an MFA student at Maine College of Art and Design and graduated with a Bachelor of Arts in Visual Arts and Psychology from Roger Williams University in 2023. Joce is passionate about creating consensual spaces for sexual violence survivors and psychiatric abuse survivors to collectively share their pain. Joce’s artistic practice is informed by abolition-centered, non-carceral practices rooted in lived experience with complex PTSD and eating disorders.