I talk about this a lot, because it is a huge part of this battle. From the doctors that we seek medical attention from, to the friends that we rely on or even the family that we naively expect understanding from - it doesn't matter who - it could even be the random stranger who casts a disapproving glance our way - It hurts when we find out that someone doesn't care enough to at least attempt to understand.
The hurt is bitter. It cuts deep. Maybe it is because we are already fighting an internal battle with ourselves, or maybe it is hormones, or maybe it is the fact that we personally don't think we would do the same to someone we love, or maybe it is a combination of all those things. The simple trust is that it can be so hurtful when people don't understand, or even try to understand.
Cushing's can be a big challenge on many levels. Not only are we battling our bodies, but we are battling a medical community that is just as confused as we are.
So far, I've learned a lot on my journey. I am still learning on a daily basis. I have learned that I am responsible for my own health advocacy and sadly, I've learned who my friends really are. I try to remember that it is difficult to understand things we haven't experienced, so I attempt to give my loved ones some slack, and most of all, I cut myself and my body some slack!
In my personal experience, I went from being a very out going extrovert, to more of an introvert. The blessing in this change is that I'm learning to tap into a self-generated inner peace and I've gotten familiar with who I really am - not just the physical me - the inner person.
If I am honest - I would have to admit it is all too easy to fall victim to wondering what I did to deserve this. I've also tried to soothe the emotional pain by telling myself that things happen for a reason. But, I have found that the "warm fuzzy" feeling that those cliché statements give me don't last or offer any long-term solace.
The truth of the matter is, this sucks. Cushing's is life altering and honestly, NOT for the better. I am not being punished, it isn't fate, it just "is." It is my reality. I can't wish it away and unlike what a friend once told me, I can't simply state an intention and decide to not be sick anymore. it doesn't work like that. (And to be honest - I've tried that too!)
Cushing's is a part of my life. That doesn't mean I have to be happy about it. It most certainly doesn't mean it is an easy journey. And I don't know about you all, but I don't want to hear that "God only gives us what we can handle," or "it builds character," or "You will be stronger for it." None of that makes me feel any better. CUSHING'S SUCKS! Plain and simple.
What I can tell you is that I have found strength I didn't know I had, I know myself better than most people know themselves - out of necessity. I've also learned the importance of a support group of people that have traveled this journey and do understand. Cushing's has taken a lot from me, but it has connected me with a group of people that are some of the most amazingly caring, kind, giving and empathetic humans I have ever met. I am grateful for the gift of my fellow Cushies. Their support and caring make this journey a bit easier. I would wish this on no one....but I am grateful that I can connect to others who do understand.
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