Good Reads

Thursday, April 26, 2012

Dealing With a Chronic Medical Condition, and Difficult People

After I was diagnosed with a rare brain cyst, I was just sure I would be getting the best treatment. I just knew that my case would be viewed as urgent and critical. Boy was I wrong! Instead, what I got was the big blow-off. I got the run around, condescending looks, and told to go home and stop worrying - my problem wasn't really a problem at all (so-to-speak).

I tried, Lord knows I tried to believe in the doctors that were "taking care" of me. I wanted to believe that the cyst wasn't "the" problem that was causing all the odd symptoms I was living with, but turns out it was. How wrong they were. Two brain surgeries later, including inserting a shunt into my cyst, and now, a whole new set of problems were developing. I had a boatload of new problems and was, in a sense, back to square one in trying to find a doctor to take care of me - to believe me and want to help me. But once again, that would prove to be a difficult task. What I got was more doctors to give me more sideways looks, and more of the brush-off that I had become accustomed to.

Turns out that my shunt had been over-draining for too long, and this over drainage caused my brain to sag and for me to develop what is known as a Chiari Malformation, where the brainstem herniates into the spine. I was in trouble. In the end, my shunt pressure had to be adjusted over and over again to get more fluid in my head, around the brain to help float the brain back up. In the end, it would help a little, but not enough. It never did float up, back to its normal position, and not all of my symptoms were resolved.

It was one thing that doctors didn't believe me and wouldn't listen to me. It was one thing to have them ignore me and my problems, and for them not take me seriously- that was all bad enough. But when certain family members, even close friends began to belittle my situation and try to make me feel as if I needed to just "get over it," and "move on," that was almost harder to take. That was almost too much to bear. You expect that the people closest to you in your life will be supportive. You expect that they will always be there for you. But for me, their denial of support and their disbelief, although it didn't affect me in the way the doctors' disbelief did, but it was almost as devastating. I needed those closest to me to be supportive, and I needed their care and support. When I didn't get it, I realized I had a decision to make - to keep them in my life? Or to cut them loose? So, I decided to cut them loose. I decided to "clean house" and only keep those that were supportive and those that were kind and understanding, in my life.

It was hard. It was a tough thing to do, but their negativity, their condescending remarks and even looks, were only making my health issues worse. I decided to surround myself with only positive, supportive people. I, nor my health, could afford the stress of worrying about whether people in my life were on my side. Whether they were going to support me, or doubt me. I found myself feeling sicker, both physically and mentally, with always worrying about whether or not certain people would listen, believe and support me. I couldn't stand the worry with what I should share with them about my condition, and the worry of not being able to talk to them about what I was going through and dealing with for fear that they would tell me I need to "Get over it," or "You've already had your surgery....move on." No, I couldn't do it anymore; not if I was going to heal; physically, emotionally, and mentally.

I have missed some of my old friends that I no longer have contact with, but it has also been a relief. I feel relieved that I don't have to make sure I say the right thing to them so that I don't get a sermon about "getting over things" or "why do I want to stay in the negative?"

I do understand that those who have never lived through what I have, cannot truly understand or appreciate what I've been through and what it is like. But I also don't think that they should try, or judge. To be preachy and bossy about a situation that they have no experience in, does no good. If anything, it is damaging and can make you feel worse - physically, mentally and emotionally. It can destroy relationships, and apparently so, because it destroyed several of my relationships.

One reason I wrote my story, "It's all in Your Head," was to help others better understand what all I went through and continue to go through. I want to help doctors and medical staff understand what patients go through, as well to help others who are living with a long term, chronic medical condition. I want them to see what a patient goes through, especially when they do not listen. I have heard that it is doing all that I have mentioned. It is out there and reaching all kinds of people. It is a human interest story that many people can identify with - whether it's a brain cyst they live with or some other medical condition. And I hope to reach many more as time goes on.

"It's all in Your Head" can be found on Amazon, through Barnes and Noble, on Tate Publishing's website and ordered through any bookstore.  It is under Maria McCutchen and will make a nice gift for someone you know who lives with a chroinc medical condition, or for yourself.

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