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Resilience Reports

Mental Health Awareness Month and the RARE Compassion Program | Monthly Resilience Report: May 2021

This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

“If you don’t already have trauma from living with this illness, well—we’re certainly giving you reason to have it now.”

This was said in jest by a hilarious cardiologist that attended to me during my hospital stay in January, in an attempt to add levity to the generally uncomfortable situation I was in. Some of this was due to the innate challenges of being hospitalized with autoimmune encephalitis (AE), while some was due to certain staff members that lacked an understanding of how to properly care for an AE patient. I liked this doctor: he understood not only the far-reaching impacts of a serious disease on one’s life, but also the psychological role that healthcare professionals play in aiding (or undermining) a patient’s recovery.

I wish the same could be said of all doctors.

I don’t expect my hand to be held or have high emotional needs from my providers, but I do get worn down by how difficult it is to continually have to advocate for myself. It takes a toll on your mental health, making the burden of living with an illness much greater than it needs to be. This is a sentiment that’s echoed across the rare disease community, and one that that the non-profit Global Genes is attempting to address through their RARE Compassion Program. From their site:

“Medical professionals often do not receive training to recognize a patient with one of the nearly 8,000 identified rare diseases; although, it is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Understanding the experience of a person with a rare disease can enable improved health, faster and accurate diagnosis, and experiences for rare disease families.

The RARE Compassion Program is a unique opportunity for medical students to develop relationships with patients and their families experiencing a rare diagnosis, with the goal of developing compassion and awareness for the challenges that patients diagnosed with a rare disease are faced with everyday.“

With May being Mental Health Awareness Month, I wanted to use this report as an opportunity to touch on how the attitudes of healthcare providers shapes the experience of living with a chronic illness. You don’t want them to, especially if they clash with your own; but oftentimes, you can’t help it. When you’re vulnerable and dependent on someone else for major elements of your wellbeing, the words of that “someone else” holds weight over you and tinges your feelings of hope (or lack thereof). That’s a concept I’ve been struggling with recently, especially in light of some less-than-ideal appointments since coming home from the hospital in January.

One thing that’s helped is being part of the RARE Compassion Program. It’s provided me with the unique opportunity to share my story, gain insight into how doctor’s are trained, and feel heard. I’ve met a range of personalities in healthcare—some willing to listen and learn, some not—and it’s been nice to develop a relationship with a medical student that you know is invested in learning how to support patients with rare diseases. There’s healing in being heard, and hope in knowing that lessons from your struggles will benefit those that come after you.

If you’re not getting the support you desire from your doctors, here’s another reminder that there are several wonderful AE communities out there.  My mental health has benefited hugely from finding others met with similar obstacles. To those of you that have shared an encouraging word with me while dealing with ongoing medical challenges, thank you ❤️️

This post is part of my Monthly Resilience Report series, in which I document the ebbs and flows of recovering from autoimmune encephalitis. Previous ones can be found below:

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