Dysautonomia Awareness Month
Imagine, for a second, if you suddenly forgot how to do everything in your life. If every task you attempted to complete was a struggle and a war. That is just one example of what Dysautonomia can feel like. Dysautonomia is a malfunctioning of the autonomic nervous system, which controls all of the body’s subconscious functions such as breathing, digestion, heart rate, blood pressure, balance, temperature, and more. There are 15 currently identified types of dysautonomia, including the rarest one Autoimmune Autonomic Gangliopathy. In December of 2021, my world came to a halt when I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS for short), a common form of dysautonomia. In February of 2022, what was left of my frozen world came crashing down around me when my bloodwork came back positive for (you guessed it) the rarest form of dysautonomia known to researchers, Autoimmune Autonomic Gangliopathy. I didn’t know where to go. I didn’t know what to think. At the age of 22, I was now asking questions such as, “What is my life expectancy?” which I never thought I would hear coming out of my own mouth. The next year was a game of is it or is it not, with antibodies levels disappearing magically. I’m still not even sure if AAG is my true form of Dysautonomia. My symptoms, however, still plagued me, and the uncertainty of the whole ordeal haunted me. The realization that there’s no cure for people like me, had me crying in the corner of my room more times than I wish to disclose.
No one prepares you for the mental war you embark on when you’re diagnosed with a chronic illness. No one tells you that you will look in the mirror and despise the body you see, maybe not for the physical appearance, but for its inability to function normally. You feel lied to. You were promised a normal life growing up, and yet the beeps of hospital machines and the feeling of EKG stickers have become your “normal”, despite every inch of your being knowing it’s not anywhere close to normality. You feel envious of your friends and loved ones. You don’t want to consider their struggles because they can’t possibly begin to understand what it feels like to live a day in your sinking ship. That’s exactly what it feels like, a sinking ship. As if you’re a passenger on a sinking ship with no lifeboat or life jacket on site, and the water coming to your feet is just a reminder of your own mortality…and the fear that it could be closer than you’ve ever wanted to imagine.
So, how do you possibly stay afloat? How do you possibly remain optimistic, cheerful, or productive? Well, here are a few tips from my own personal experience.
Remember this is not your fault. There is an incredible amount of guilt that comes with living with a chronic illness. You can spiral and go in circles thinking, “did I do something to deserve this.” Trust me, I’ve been there. It’s important to remember that anyone can become disabled at any time - this is not personal! Remember to reframe those thought patterns and introduce more supportive thoughts in response.
Allow yourself to be sad. You are allowed to feel your emotions as they come. It’s normal for people with chronic illness and disabilities to grieve their lives previous to getting sick. Remember to honor your feelings as they come. You can discuss these with a trusted friend, journal, or just have a good cry if you need to.
Join support groups! It’s very easy for those with dysautonomia and other chronic illnesses to feel isolated from their able bodied peers. We oftentimes do not want to burden our friends or family with our depression, symptoms, or other feelings. Joining support groups can help you build a sense of community. It’s very validating to hear other’s experiences. You can also build off from one another, brainstorm questions to ask your doctors, share references and provider information, and more!
Create a video diary. On my darkest days, I like to create video diaries about how I’m feeling (whether that be crying, screaming, or otherwise). My point for doing this is to provide motivation and pride to my future self when I get past my hardships. When I watch those videos, I can think, “I did it.” It’s also validating for others to see my struggles, so they know they are not alone.
Modify your life. There is no shame in creating accommodations, boundaries, and modifications for you to participate in activities. If using a mobility aid would help you participate in activities you once enjoyed, and would help reduce symptoms, remember there is no shame in using one. Advocate for yourself to have accomodations in doctor’s offices, school, etc as needed. Remember to communicate what you need with your friends and loved ones. Those who truly support you will try their hardest to nonjudgmentally include you in activities by providing modifications and support if needed.
I hope this blog post provided you with a sense of support and community. I hope that this was as validating for you to read as it was for me to write.
Below are some excellent resources for those with dysautonomia, or those with loved ones with dysautonomia.
http://www.dysautonomiainternational.org/
https://thedysautonomiaproject.org/resources/
https://www.dysautonomiasupport.org/
https://nyulangone.org/locations/dysautonomia-center
https://nyulangone.org/doctors/condition/dysautonomia?sort=availability&page=1&treats=all
https://www.imdb.com/title/tt14508146/
Thank you so much for Serenity Zone Therapy for allowing me to tell my story.
~ Celine L Colon
