Dark side of rare

Dark side of rare

Sometimes I’m not sure where to start.  So many thoughts run through my brain, like endless waves crashing against an ever shrinking wall.  I wonder sometimes why me?  How did I get so “lucky” to be so “special”, and if I really am then how?  I’ve been told that God does not give us anything we are incapable of handling, but it doesn’t always feel that way.  Like when I lay awake in the small hours of the morning with nothing to calm the crashing waves.  Sometimes I think my mind is worse than my disease.   I have been diagnosed with an “ultra-rare” disease.  Shit like that doesn’t happen.  Bad breakups, heartache, failure, success, those are the things that happen.  I break my arm, or get dumped, I even crash my car.  All these are so small and insignificant when someone tells you that you suffer from a disease that most professionals can only claim to have heard of maybe once in their medical education.  I curse modern technology and medical advancements sometimes because without them I would just have kept living my small endless circle of feeling like there was something wrong, being depressed, breaking down, then getting over it.  But nope, not anymore, now I know I have Hypophosphatasia.  To be honest, among a million others thoughts, I worry about the way my disease effects those around me.  What does my husband feel, how are my parents doing, do my friends and family take me seriously when I try to explain?  I can’t read minds, but sometimes I wish I could because then I would know for sure.  What do you do when the person you love is suffering?  If I’m honest with myself, and the roles were reversed, and my husband or mother or father told me they had this……I’d be devastated.  I’m not sure I would ever be able to treat them or look or think about them in the same way.  But somehow I expect for those around me to both act like nothing has changed, but also empathize with me.  Kind of a have your cake and eat it to type of thing.   I had goals once, and dreams, I was going to be someone and do great things.  Somehow that feels so hard now, and yeah I’m 28 years old with my whole life ahead of me.  But sometimes I want to skip to the end, like reading a book, and see what happens.  A part of me needs to know if things might have been different.  And what would have happened if I had known in my “younger” years that I had this, or if I had never had it at all.  Would school have been more tolerable, would people have been nicer to me.  I’m not sure if that would have been a good thing since sometimes kindness from pity is worse then cruelty.  There is a certain kind of loneliness that comes with being “rare”, and an even worse one when you look “normal”.  

When you have a rare progressive disease no one seems to think of the other effects besides how it affects your body.  You don’t think about how it affects the family, your future, the chance for children, travel, even whether or not you can work in the field of your choice.  No one wants to feel like the greek Atlas holding the world on your shoulders, but the reality is that is what we deal with.  Being rare is not limited to the effects of the disease on the individual, it expands to effect every part of that persons life and extended life.

So I encourage you if you know someone with a rare disease, especially if that disease is invisible to take a few minutes and consider that that person is not only carrying the burden of their own disease, but how their disease affects all the people around them.

2 Replies to “Dark side of rare”

    1. My mom once told me there is no way around an emotion but through it. So when that dark side starts to effect me and I just let myself have a meltdown and cry my way through it until I can renew my fight to be strong and carry on. I also had a strong woman once ask me if I knew how many times it took to fall apart over something before you stopped falling apart. I didn’t know and she simply replied, as many times as it takes.

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