Invisibly Visable

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Embrace Your Inner Awesome. God I miss Bradlees …

When I initially started blogging ,again ,I tried to keep focus, because that’s what I’ve read, to have a target audience and all. Focus , historically speaking, has never been something I’ve been good at, ever. So today’s topic : Living with a invisible illness that is chronic, painful, debilitating, unpredictable and potentially life threatening. In my previous posts I had mentioned always feeling like the weird kid, the odd duck, and never knowing where to fit myself in. It’s hard to get an idea of where you belong when you’re chronically broken and being pieced together. 

“What’s wrong with you now?”

I’d get that a lot. I’d shrug it off, or try and dumb it down to lessen the intensity of the inevitable eye roll. I never really got a fair shake at life from day one, it was discovered that I was born with two congenital birth defects, one of which was supposed to guarantee a dirt nap far before my surgery at 15 months, I however was fortunate enough to have a paramedic for a dad and a mom with intuition only rivaled by her own determination. The dust settled long enough to make it to kindergarten before my next surgery, and from then forward my childhood memories consist of  your average kid stuff, sleep overs, girl scouts, casts, stitches, science fair projects, surgeries and occasional hospitalizations and odd allergic reactions. Sometimes I felt like the science project.

As I sit here today I’ve had more surgeries and hospitalizations than birthdays. But I’m not here for a pity party, I’m here to tell you it’s ok. It’s ok to be the sick kid, or if you have a sick kid or know a sick kid. I’m not psychologically damaged or defective as a result of these medical anomalies, I feel like I am stronger and more determined because of them. My tolerance for frustration and adversity is amazing, true story. Being chronically ill taught me that sometimes you have to work harder and longer because giving up is not an option. Giving your self a break is ok, and absolutely necessary, but throwing in the towel , stomping your feet and giving up isn’t going to work because life simply does not work that way. You just have to find a different way of doing things, hell you may even have to ask for help and accept your limitations for what they are. Limitations and differences are just that, they do not encompass who you are as a person , they do not affect your value and sometimes you have to work a little more to find the life lessons and happiness in the pile of $hit luck you were handed .

Life Lessons I learned the hard way :

You can not make your illness go away by pretending it doesn’t exist : believe it or not if you try to over extend your self to function ‘normally’ and ignore what your body is telling you, you will pay dearly. 

It’s ok to admit to having a bad day: I’m totally guilty of nodding sympathetically while someone complains about their headache , meanwhile my joints feel like they’re ripping apart and I had to give myself a pep talk to get up the flight of stairs. Sometimes chronically ill folks feel like they have to be superman because they deal with pain every single day, all day and for some reason this would make our complaint invalid. Not true.

Putting up walls is not protection, it’s isolation: I have a bad habit of pushing people away because I feel like I’d somehow be a burden or I felt like no one could possibly know what I was going through. While it is impossible for someone else to know exactly what you’re going through it doesn’t mean they don’t care, I’ve also found it helpful to read up on my disorder and educate others, it helps me feel a little less helpless with an unpredictable and incurable disorder.

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Now for the curious, those of us with invisible illness ask : do not assume. Do not assume that you think you ‘know’ what is wrong with us, do not judge what you do not know and do not offer empty statements like ‘get well soon’. There is no ‘all better’ for me, actually it progressively gets worse, but you know what, I’ll figure it out. I’m not helpless, I’m quite resourceful and well educated as you have to be when you have to be your own advocate. I do not take advantage of half the services or treatment available because the aggravation that follows negates any benefit for me. A lot of people with Ehlers Danlos qualify and are granted handicap status, and as the pain and difficulty increases with walking and maintaining my blood pressure it certainly would help tremendously. I look ‘normal’, no visible sign of deficiency and coupled with my age I can already feel the harassment that is guaranteed to follow. Internal dysfunction and pain are not always obvious to on lookers as we chronically ill folks are so good at masking and dealing with pain that if it were an Olympic sport we’d take home the gold medal. 

When you have a poorly understood condition such as Ehlers Danlos Syndrome and you get into a pattern of progression , stagnation and the illusion of a plateau, you learn to adapt. For me right now its dealing with the worsening nervous system dysfunction and increasing pain and fatigue. It can be frustrating due to the medical treatments being as accurate as 50 cents pitching skills, so having some sort of support system in place is important.

In closing, my fellow odd ducks, self care is super important. Asking for help is ok, and limitations do not make you any less awesome, sometimes all it means is that you have to go about things a little bit different. On lookers, I ask that you do not automatically assume that the ‘normal’ appearing person who is struggling is faking it or has ulterior motives. Life isn’t always cut and dry or black and white, sometimes variations are so beyond the gray area that it morphs into a glittery rainbow of weirdness. Sometimes all we can do is learn how to help our selves the best we can.

~Birdie

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