Even if I Lose My Diagnosis, I Will Never Lose My Chronic Illness Tribe
Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where I was either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
Then came diagnosis. As I look back on the two years since then, the journey has been just as wild. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.
But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?
There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part is the fact that I would be back to where I was before. Out there in the desert again, a lonely leper.
But the reality is that the door to diagnosis wasn’t just about the specific diagnosis. It felt like it at the time, but in truth, it just led me to find a larger and more complicated tribe than simply the EDS Zebras. I belong to the chronic illness world which includes the undiagnosed! It turned out that I belonged to a whole tribe I didn’t even know about, that I didn’t know even existed, never mind how to find them!
When fibromyalgia was added to my official diagnosis, I wasn’t stumped and lost like I was after the EDS diagnosis. Instead, I simply popped over to the other “department” of The Mighty, asked around my “rare diseases” community, popped the questions on my Facebook page instead of having to search for new people and had more answers than I could cope with within the hour. If I was to lose my EDS diagnosis tomorrow, I would not be all alone in the wilderness again, I would simply slightly adjust my position among my comrades.
There are over 200 connective tissue disorders (CTD) and every doctor, no matter their other opinions, agrees that I, and my children, all have a CTD. They also agree it is genetic as we all have the same symptoms. Most of those CTDs fall into one of a small handful of categories, and we have very clearly (thankfully) ruled out of most of them because they do have specific tests. The closest fit and the only category left are the Ehlers-Danlos syndromes, so while we still don’t fit very neatly into one of them yet, the doctors tell me it doesn’t really matter which one because we can’t fix it anyway.
When I think about it with my heart I get fearful and anxious. I can’t help wanting to be more of a certainty. I am frightened of being a “token” member instead of a “real” one. The memories of the wilderness are all too near, and they haunt me in my weakest moments. Pleeeease don’t send me back out there! Pleeeease let me stay here in the safety of my tribe! I am a Zebra, I always have been and I always will be.
But when I think with my head, I know that for the most part, they are right. And no matter any change in diagnosis, I will always belong to the tribe.
This post originally appeared on the author’s blog.
Thinkstock photo via Rawpixel.
Jennifer has Ehlers-Danlos syndrome (EDS). Jennifer was born in South Africa in the late sixties, into the worlds of apartheid, feminism, and strict religion, to parents struggling to find their own place in the world and to make a difference. Lost in their battle to be different, better, "cleverer" than those before them or around them, and her mother’s fight to break moulds, little Jenny fell between the cracks. Born a girl instead of a boy, bubbly instead of serious, fun and talented instead of academic, everything about her was “wrong". Neglect doesn’t always look like dirty or starved or diseased or beaten. Neglect is chronic and often invisible. In a small bubble entirely cut off from the rest of the world, scrawny little Jenny's voice, squashed by her parent’s need to find their own, is swiftly silenced, again and again. However, her shine refused to die and survived within her as a spark, a fighting spirit, and a sense of hope that defies logic. It took her five decades, six countries, multiple diagnoses, and ultimately a physical and emotional collapse for little Jenny to successfully find her voice, to thrive, to get the medical and psychological care she needed, and to begin the journey to a place of sanity and peace. Her story is one of crushing loneliness and isolation, but more than that, it's ultimately a story of resilience, hope, and redemption in ways that she could never have imagined. Jennifer, diagnosed at 48 with EDS, is a mentor, counsellor, artist, and now a successful author, writes for various blogs, and other public spaces on neglect, emotional abuse, anxiety, disability and chronic illness. You can find her on most social media platforms under @JPeaSmith. Jennifer is the author of "The Lion and the Peacock” and the first in her epic story “My Africa My Home - The Fault in the Family Memoir Book One”. From Jennifer: Jennifer is my name, Peacock-Smith is my pen name as well as a very special family name (you'll have to read the book to find out where it comes from but that's not out as yet, it's coming though!) If you’d like to receive the first chapter of My Africa My Home – The Fault in the Family Memoirs Book 1 (for free, in your mailbox), then sign on for my “big news only” (I promise I won’t spam you! I only send them when something important is happening) then clicker here on the Newsletter link: http://eepurl.com/cvljU9
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