Month: February 2015

My Red Sidekick and the Stigma.

My little red bracelet is the only giveaway that I’m sick. I’ve had this tremendous thanks throughout this journey that I’ve somehow been able to “cover up” my illness because I don’t have anything physical to the eye that gives away that I’m sick and that’s always been comforting. I’ve been able to put makeup on the dark circles under my eyes from my body’s pure exhaustion of fighting. I’ve been able to put on sweatshirts to cover up the bruises from IV pokes, and theres always been a smile to cover up the hurt. It’s been the thing that’s kept me feeling normal when everything else seems so foreign to me. But with all that I’ve had this little red bracelet on my right hand. It’s worn out it’s the second one I’ve had, the first broke. I wear it every single day, all the time, it never leaves me. It’s leather and buckles and has a medal on it that tells you all anyone would ever need to know if I was ever found alone. It says “Medic Alert.” and without that I’m not defined as sick. I hear doctor’s say invisible illness all the time when talking about POTS and my life but I never really put thought into it. I bought a bathing suit last week and when I tried it on well the realization was all really overwhelming. I stared at myself in the mirror and looked at myself from the bottom of my feet to the top of my head, every inch. It all spoke healthy except that little red bracelet. I spent the rest of the day thinking about all the different things I’ve been able to do because of my red bracelet. You see my body has many many limitations that aren’t visible on the outside but definitely there on the inside. I thought about all the times I’ve carried water bottles into places everyone around me can’t because I’ve shoved my little red bracelet in their face. Okay I should correct that, I haven’t actually ever shoved it into somebody’s face but I like to think in my mind that it’s my partner in crime and that it has super powers of making things happen for me. The times I’ve skipped ridiculously long lines at events because my little red bracelet was there to say I couldn’t stand that long. When I’ve managed to sneak snacks into places they shouldn’t be because I needed the sodium in my system. You see I’m usually very kind when I extend my arm and explain that because of my medical disability I need to be given an exception and that in order for me to participate like everyone else I need the accommodation. Most of the time people are beyond understanding and eager to help but there are the few every now and then that just don’t understand. Because when I’m not in a wheelchair nobody that doesn’t already know me would understand that I really am not very good at standing for a long time, I get hot even when it’s cold, loud sounds make me seize, and occasionally I fall over. They don’t know because they can’t see. As I’ve gotten older I’ve had to advocate for myself more often, where I would usually have my mom speak for my needs and make accommodations for me, I’m having to do it on my own. Nobody would turn a little girl away from what she asks for but now that I’m older I’ve learned that people aren’t always afraid to voice their opinions and some of them just won’t get it. I’m a very independent person and will do what it takes to make things fair for me as I’ve dealt with this for quite some time but that isn;t the case for everyone. What I’m trying to get at here is that not everyone has a little red bracelet like I do and we all carry something debilitating to us in our own lives and I think that’s extremely important. As we go through life we interact with so many different people and not everyone is as confident in delegating for themselves. We must be careful with our words and fragile with our actions. That also goes very much said to the way we react to such things. Many people are hesitant to tell me “no” that they simply can’t make the accommodation for me and of course sometimes that is the case but I do believe that when we are able to communicate with other people our needs, then good can come from it. Mental Illness, Disorders, Disabilities and so many other things have such a negative stigma to them now a days but I really do think that we are in the generation of change and I do believe we have the capability of making difference beautiful, because it truly is. When one is able to walk this earth with confidence in what makes them different it is so much more beautiful than when one hides in embarrassment and harassment from difference, it isn’t beautiful it’s upsetting. I have this red sidekick that makes the invisible become visible for me and it’s taught me confidence. I think we all have the ability to find our own sidekick when we give ourselves a chance wether we wear our difference on the outside or the inside.