Support comes in many shapes and forms for patients living with Dysautonomia and related illnesses. The patients look for medical answers and solutions, as well as symptom relief. Doctors and other medical advice are reached for in hopes of accessing of all of these. The level of support from this can range from remarkable to a loss of that same hope and a feeling of isolation. There is more that carries us along our paths than the pieces of dependence we put in the hands of the medical field.
I have only been afflicted with my illness for a year and in that amount of time it has brought me many different physical and emotional pains. My body’s symptoms are treated with medical care and I also look for the experience of other patients that have paved the way through this before me. When you have a rare condition, sometimes it’s difficult to find others that share the same symptoms.
I was fortunate enough to receive the greatest of medical and family support from day one. My family has been imperative to my emotional and physical being, especially at times when I keep my eyes closed to my needs. I will say with all my heart, my gratitude reaches beyond any words of expression for all that my family has done.
As time rolled forward, I’d find myself with ever mounting questions of my disease and wondered if others had experienced much the same. I knew of no one with my condition, so I searched online for whatever information I could find. Medical documents, testing, and general information were all there. I found myself looking for more than just information. I wanted to be able to share and compare experiences with others who suffered the same way I had.
My youngest daughter suggested that I check out a support group on a Facebook page that she had found. I was a little apprehensive, being that I only used it for friends, family, and entertainment. Reading the cover of the site was enough to compel me to request to be a member of their closed group. Upon acceptance, I searched their site and found loads of resources that had not even crossed my mind. Information is valuable, but I was still looking for some personal connection to my condition.
Their discussion feed was full many different members comments and questions from each day. As I tried to familiarize myself with their medical lingo and the acronyms they were using, I could not help but notice how respectful and forthcoming these patients were with one another. With thousands of members sharing private experiences and their victories and setbacks, I was moved by their openness and willingness to share. It was not a typical platform to harp and rant, but rather to vent frustrations while in need of ideas and support. There seemed to be some intangible bond between these members. This was not the sort of thing that this “private, don’t talk about your problems” fifty-two-year-old man was accustomed to. Sure, I could imagine sharing the light stuff and trivial things, but I could see there was more to this here.
That intimated me. It scared me.
Why? I did not have to participate. It looked so revealing and that is just not cool. Men are usually quiet about this stuff. As I safely read the feed in the comfort of my own living room, I could see the members were predominately women. I noticed just one man’s post from a few days earlier. In and out in a flash, that was it. I figured I could just “ghost” along, but that was not what I was looking for. I wanted some tangible connection to my disorder, beyond data on my symptoms.
As I introduced myself, I felt like I stuck out like a sore thumb. As it turned out, that was all on me. I was just another voice, another keyboard, another patient or something like that. That’s how I convinced myself to engage. For whatever Jedi mind tricks I played on myself, it opened the door.
Once inside, I realized that I did not open that door. They had opened it for me and I just needed to have the courage to meet them as openly as they had invited me. Aside from sharing everything, from conditions and symptoms to testing and treatment experiences, it was much greater than that.
Before long I had discovered that connection, from others to my illness. This was the one I’d been looking for. This changed me in ways I could not have possibly seen coming. Chatting with the other members about all their different disorders and their battles with symptoms and day to day life was humbling and inspiring. Their respectful and considerate nature had eased the way for me to open my closed vault.
I soon realized that there was more than just an online community here. They were a family, a family of support, knowledge, experience and a true compassion for all and their illnesses. As every good family does, they even give that little motivational kick in the butt when needed. Not every member is locked in tight, some just pop in from time to time, but that doesn’t seem to make them any less of a part of the family.
This family, DSN, Dysautonomia Support Network, has inspired me to open that, keep all inside, vault. The change of my emotional state has changed emphatically for the better. Not only is that just plain old good, it is healthy for the patient in me.
It’s opened my eyes to a whole new world of how complex life can be with any sort of disease and how some are cared for and others have difficulty getting any medical assistance that they require. I could go on and on about this, but maybe in another piece. It is more than just the struggles and compassion for each others symptoms. There is the unmeasurable strength, desire, and fortitude from each person to press on day after day that leaves me in awe.
I sit here writing. I’m not a writer or shall I say, wasn’t? I share my thoughts to digital paper as if it was a part of me. It’s therapeutic, it gets it all out there and clears my mind for the real fight, the one of illness. This family has helped me and in some way, I now strive to help others to not bottle it up like I chose. Rare diseases have so much research needed to be done to fully understand all their aspects, let alone more comprehensive treatments or a cure. I also,now, find myself speaking of awareness and fundraising for these concerns.
Who is this guy?
It’s me, the ever-evolving new me! My cherished wife and two daughters like this new guy and so do I. This online digital family has opened its doors to me. I cannot put it into words, but this is a family that’s much deeper and greater than anything digital. They are part of my family now and I thank them for that. I look forward to sharing time with this new part of our family as we help carry each other down our paths. I hope to add my own ripples to the many started before me in the light of awareness and support for our growing family.
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