Having a Rare Disease or Condition Changes Everything. All the time.
Much sooner than expected, I found myself too tired to continue my life as I planned it. My original doctor didn’t think there was much wrong with me. Menopause, she said. Lose weight, she said. Get more sleep. Exercise more. Eat more vegetables. Learn to relax. Drink more water. But, in my heart, I knew that she was missing something. What was happening to me was so much more than anyone was giving it credit for being.
I was the teacher who never sat down. My days were busy teaching middle schoolers how to cook and keeping older students in the frying pan, and out of the fire. I simply loved what I did right up until I couldn’t do it any longer. For years no one, least of all me, understood what was happening. All I knew was that I couldn’t. I was done.
Life as I knew it ended. Unable to continue, I reluctantly retired. Days that used to have every minute scheduled, stretched on endlessly, full of not much. I found myself moving from nap to nap, limping through a vastly different, often lonely, daily existence punctuated by visits to medical professionals. Five years into retirement I was finally diagnosed with a very real, but rare disease.
Once I was over the shock and the anger, the diagnosis came as a relief! No one wants to be diagnosed with a rare disease, or with anything life-altering for that matter, but my life had already been altered to the point of being unrecognizable. It was nice, finally, to have a reason why. I knew what I had, I understood what it was that had changed everything, and I hoped there would be a prospect of feeling better. There had to be treatment options available out there, right?
Although the diagnosis threw me for a loop, I welcomed the possibilities that having a real (as opposed to imaginary) condition created. The teacher in me now had lots to learn about: finally there was a way for me to be proactive. Looking for information, I came across a Ben’s Friends community, and I was eager to join. I found information, and lots of it, but I also found a goldmine of experience, wisdom and support.
Suddenly I was not alone, and I discovered that my experiences were by no means unique. That alone was life-changing: there were people who understood, and whose brains I could pick. With the help and encouragement of those good new online friends, I was able to advocate for myself and find the treatment I needed. And it was that treatment which changed the course of my disease, and me, forever.
One of the unavoidable consequences of having a rare disease (whether it has been diagnosed or not) is that it changes your family and your social life: limitations, pain, fatigue, or a new disability alter how you relate to others, and how others relate to you. It’s inevitable and it’s damned tough. Being diagnosed, and then finding others in a similar position, though, was a welcome change from wallowing by myself. And my family and friends noticed (and appreciated) the change that brought about in me.
As time marched on and I shuffled through life as a person with a rare disease, special needs and a disability, I collected some interesting, new and far-flung acquaintances and friends. Those people offered a refreshing change of perspective from my provincial existence. Yet more change, only this time the change was welcome.
Over time, as I began to become familiar with Ben’s Friends’ many and varied communities, I collected knowledge of rare diseases, and I developed an empathy for, and an understanding of, the people who struggle with them. That’s a change that I would have never experienced in my lifetime had I not been diagnosed with a rare disease myself. And what a rewarding change it’s been!
Before I left teaching, I had visualized a retirement filled with travel and walking adventures, interspersed with sommelier gigs. I had invested a great deal of time and study in laying the foundation for my retirement career as a sommelier, but like my primary career, my rare disease changed my retirement career plans, too.
It was yet another negative change brought on by my rare disease. The flip side of that particular change is that I’ve been fortunate to have been able to volunteer as a Moderator, and later in Moderator Support at Ben’s Friends. There, I’ve had the pleasure of meeting many of you and learning so much. I’ll admit that losing two careers to this wretched rare disease was a change that I didn’t take lightly, or accept easily.
I doubt I’ll ever completely get over those losses, and I’m sure there are more losses and changes to come. It seems that chronic conditions never really leave well enough alone: they change everything all the time. And yet, as I go about the work that I do at Ben’s, I’m happy with things just as they are. My life’s very different from what I had imagined, but it’s still good.
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Share your thoughts on this article by going to the Hoofbeats Discussion Thread in General Discussion.
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This article was written by Seenie, a bensfriends.org member who works in Moderator Supoport. She’s Canadian, eh? and after sorting the moderator emails from all the communities or drying out from her pool workout, you’ll probably find her in the kitchen cooking with wine. Sometimes she even puts it in the food!
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