I’m Not A Hypochondriac
Hi everyone! I’m so glad I found this supportive, knowledgeable community.
I’m a twenty-two year old young woman living in the USA who’s been chronically ill for the last four years. Despite being born three months early, I was very healthy my whole life. When I was eighteen, in the winter of 2020-21, I contracted Covid (the SARS-CoV-2 virus). I was in bed for seven days, with a fever for five. I recovered, and everything seemed fine, but for some lingering fatigue. Then between January and April of 2021, I developed a laundry list of symptoms that have persisted chronically since. Some present in a relapse remitting pattern, some wax and wane but never leave completely. Summarized, these symptoms (or associated diagnostic term used to describe them) are:
- Fibromyalgia
- Chronic Migraines
- Dysautonomia (POTS)
- Severe Depression & Anxiety
- Psychosis w/ Paranoid Delusions
- Altered Level Of Consciousness
- Focal Seizure Symptoms (aware & impaired awareness, behavioral arrest, non-convulsive, catatonia like symptoms)
In the last four years, I’ve had eight psychiatric hospitalizations, three general hospitalizations, a complicated pregnancy (my daughter is doing great now!), two stays at mental health rehabilitation centers, and ever increasing levels of disability. My career, plans for education, independence, social life, family relationships, marriage, sense of self, reality, and sanity are up in flames around me. My life is made up of struggling through ADLs, attempting to care for my eight month old (impossible without immediate and extended family support), managing symptoms, doctor’s appointments, tests, and ER visits. I am drowning in hundreds of thousands of dollars worth of medical bills my disabled body and mind can’t work to pay for. My family is exhausted with my health issues, and most are convinced I’m a hypochondriac, doing it for attention, or faking it to get out of responsibilities. With most tests coming back normal, it reinforces that feeling. I’m struggling to believe myself anymore. The psychosis makes it difficult or impossible to tell reality from not. What if I am crazy? Just doing it for attention? I don’t think I am, but that’s what others say. Continuing to push for more testing, a diagnosis, and maybe, hopefully, treatment, when no one in your support system believes you, the doctors say they can’t do anything, your life is continually falling apart, symptoms are a daily battle, and your own mind is a constant nightmare telling you terrifying things that aren’t reality but feel real is- I don’t have words for it. Everyone and my own mind are telling me that I’m shooting in the dark. Despite that, I believe I might have anti-NMDA receptor autoimmune encephalitis.
My general bloodwork is normal. I have a few red flags for non-specific autoimmune markers. My head CTs (w/ contrast) and MRIs (w/o contrast) are normal. I’m waiting on an ambulatory EEG from my neurologist, with whom I have an appointment later this week. I will push her for a referral to a colleague of hers, a neuroimmunologist at the same clinic, and for the appropriate testing: spinal tap w/ correct CSF autoantibody testing, autoantibody blood tests, EEG; to put a rush on these tests, to admit me if possible.
I’m wondering if anyone can offer advice on how to best advocate for myself? On how to best communicate with my neurologist? If anyone has any insight or advice on my case from an outside observer’s perspective, from their own life experience, etc, please share. Any words of encouragement, advice, support, or guidance, are deeply appreciated. Thank you so much for reading my lengthy post. I hope you all are having a good day.