Monday, June 20, 2011

Just say NO

Finding out you have an illness can be one of the most challenging experiences you have had to date. Being surrounded by the right people can make or break you in the beginning. It usually takes months to find out what’s really wrong, if not years. Your friends and family might not always understand, or they may not want to. Sometimes we learn the hard way just say no to letting yourself hurt because of people who can’t, or choose to not understand.
Months back when I told my sister how I was feeling she said, “your diagnosis is fibromyalgia, now you don’t have to see a doctor,” and I was like, what the heck is that?! I watched a few youtube videos and many tears later Michael took my computer away from me and made me go to bed. When I suggested it to my friends, one was like, “oh I know someone with that, it’s not that bad,” and then from then on it was as if my pain was diminished because she knew someone who was living with it, I would be okay.
Then I went to my doctor who mentioned it may be fibromyalgia, in so much pain that day that I couldn’t sit, I stood there dancing back and forth because my twitching was so bad I couldn’t stand still, I just cried, “no please tell me it’s something real.” The doctor just said, “this is why you are going to a neurologist, I just said it could be, it may be something else,” she paused and said, “it could be MS.” But continued and said, to stay calm it was very unlikely to be MS but it wouldn’t hurt to read more about it.
I went to the neurologist who seemed stumped by my blood work and reactions to things, he sent me for an MRI and then I received a phone call with my results, “well good news it’s not MS, I think it is the fibromyalgia, so we will treat you for that,” he paused and continued, “and you have arthritis in your spine,” and when I asked it that could be the cause of my pain he replied, “no.” We hung up with no other explanation, recommendations to see another doctor for treatment, or what to do next. I walked to my car, fighting back the tears because I know I have a life sentence of pain, youtube said so.
In those weeks I lost my closest friends, or at least people who I thought were. When I was scared I would tell them what the doctors said I could have starting from a thyroid problem all the way to Fibromyalgia. I confided in them before I told my family I didn’t feel well, and to be honest I hadn’t felt well in about a year. I was told by them that I was doing all of this for attention, and that I was making it all up. Having a disease that is worsened by stress this was not helpful. I blamed myself, and even thought they were right, maybe I was faking, maybe this wasn’t real. Maybe I really was a horrible person. Accepting my diagnosis has not been easy for me. I know I am in pain, yet somehow when the people you trust the most tell you that you are a liar, you begin to question everything, especially yourself.
If there is one wonderful thing that happened out of all of this, it was I lost those friends. Because in this new course of my life, I have made much better ones. Ones that think it’s normal to talk about your fears and pains. Ones that don’t want you to pretend you are happy and life is good just to make their problems seem more important than yours. People who don’t always want me to make the effort, because they know how hard that effort can be, and appreciate you made it. The best thing you can do when you are in pain, is get away from people who don’t care or can’t understand, and find people who do. They are everywhere, and one of them is right here.

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