As a teenager, I briefly thought I was bisexual, so I came out as bisexual, not long after, I realized I’m a lesbian and I came out as one. Now, I’m finally coming out as someone who has FD. I usually try to hide this from most people, only those close to me know about it. But, I recently started reading a blog by another person who has FD, ‘Tully’s Blog’, to be more specific. She is so great, I really love the way she talks about FD so openly and naturally. This got me thinking, why on earth do I hide it so often? It’s not like I did something wrong, it’s just part of who I am. Anyways, before I get started into more details, I should probably mention that FD does stand for something… Familial Dysautonomia. Please see this link if you are ever curious about it and want to know more than what I am going to share.
I’ve had this since I was born, diagnosed as a baby. Basically, it’s a super rare genetic disorder that affects my autonomic and sensory nervous systems. Long and complicated story made somewhat short, it makes my blood pressure, heart rate, balance, senses, and swallowing out of whack. Also! I don’t produce tears, so I have to use eye drops every day. I cry just like anyone else, just no tears come out. My sense of pain and temperature is less than others, I have trouble swallowing and have issues with my balance… there’s other stuff too, but that’s the main stuff I guess. Between 600 and 700 of us in total, I’m the only one in Ottawa for sure. I’m really lucky though, being one of the milder cases. Even though this does affect me every day, I am still able to function and take care of myself.
When I was a kid, I had to have nurses with me at school every day, to help with feedings (through a g-tube back then) and things like that. This stopped when I was 13, so going into grade 8, I was nurse-free. A huge step forward for my independence, but I also gotta admit, I do miss them. Over those almost 13 years, I became pretty close to many of them. Anyways! During those years of my childhood, I accepted the fact that I had “special needs” as I called it back then, and even used it on occasion to get out of doing stuff, like my homework. Then, as the nurses left and I soon went into high school, I did everything I could to be like everyone else (much like most teens at that age, I think hehe), and almost tried forgetting that I had this condition. Denial was my coping strategy at the time, and I think I did a pretty good job at hiding it. As I’m getting older, I am realizing more and more that I can be open and honest about it, so this post is a big thing for me. Also, during my adult years, my symptoms have become more visible (wobbling, coughing a little more than others, and a below-average height) and affect me more. I guess mainly, I get dizzy more often, have more issues with my balance, my g-tube, my anxiety, and have periodic autonomic crises… to name a few, that is. Throughout my life, I’ve gone from completely accepting my FD, to completely ignoring it. I have done both extremes. Now, in the past few years, I think my goal has been to find the happy medium between the two.
Honestly, I think one thing that makes things a bit more challenging, is that people sometimes notice this stuff when I’m out in public. I do understand, because if ever someone around me seems wobbly and cough-like, I also wonder if they are okay, contagious, etc. But, with me, these symptoms are part of my everyday life, and while I appreciate the curiosity / worry from strangers, it does suck that it needs to be explained to them that I’m not actually drunk or gravely ill, it’s just a regular day for me. FD being as rare as it is, seems to make it more difficult for people to accept and/or understand.
Even though FD does affect me every day, I always do what I can to be independent and live life to the fullest. Cheesy, I know, but still very true. Thanks Tully, for giving me the inspiration (push) that I needed to write about all of this! I am now Out-And-Proud with my FD!