Minding the Gap Between Chronic Illness and Mental Health

When I think back over the years I’ve lived with my rare disease, neuromyelitis optica (NMO), and several comorbidities, including the times I received my life-changing diagnoses, one thing in particular stands out: Not once was I offered any mental health support.

It’s astounding to me that not a single doctor has ever asked me how I am doing mentally or emotionally, considering the bombs they’ve unceremoniously dropped in my lap over the last 14 years.

It’s baffling that there seems to be a complete disconnect in the medical world when it comes to chronic illness, disability, and mental health. When a doctor diagnoses a patient, they are sharing news that will change the person’s life — but how much thought is given to the impact the news will have, and how that patient will cope with and adapt to their new reality?

I’ve never received any resources — no pamphlets, websites, or phone numbers I could use to seek information and support in dealing with my conditions. Those things would have been a welcome lifeline in those overwhelming moments when I felt like I was drowning. Instead, time after time, I’ve walked out of the appointment scared, confused, devastated, and completely on my own.

Feeling the feelings. (Photo by Lelainia Lloyd)

Being chronically ill and seeking medical care on an ongoing basis have had a huge impact on my life.

Repeatedly making myself vulnerable and blindly entrusting my well-being to strangers are stressful. Being gaslit about my own body is infuriating. Undergoing painful procedures, living with chronic pain, and having adverse reactions to medications are scary.

Living with and adapting to disability is hard, both mentally and physically. Experiencing ongoing grief about my health is isolating. Constantly advocating for myself when I feel I have no power as a patient is demoralizing. Managing my team of more than 25 specialists and caregivers, none of whom communicate directly with one another, while navigating a broken, ableist medical system takes a toll. 

All of these things bubble over as anxiety, insomnia, anger, resentment, sadness, and exhaustion. It’s not enough to diagnose a patient and simply treat their body. I am a whole being with a mind and a soul that need care, too. I have my peer support group and friends and family to lean on, but sometimes issues come up that require more attention than someone merely listening.

A lot of lip service has been given to the idea of integrated and patient-centered care, but until we have free and open access to care, which includes counseling as a means to support and strengthen our mental wellness, it remains merely a concept and not a practice. (And in my opinion, it’s a best practice.)

Recently, I spoke on a webinar panel about mental health and NMO. I felt it was important to step up and show leadership to help end the stigma around mental health. Too many suffer in silence because they are afraid they will be judged, as if not feeling OK is a character flaw, and not a result of chemistry or circumstance.

I spoke up because I am a leader in my community, and if I can show that it’s OK to talk about mental health, maybe others will join the conversation and perhaps even seek support. If we as patients sit around waiting for our doctors to ask, we may die waiting. We need to speak up and keep asking for help because we simply can’t afford to wait. 

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Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.