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Chronically Writing: Feelings

Wow, yeah. This is a huge topic. Everyone with chronic illness feels differently. All of us have the same needs, feelings and experiences as everyone else. We just have an invisible illness that is disbelieved by most people. So, I will speak about mine. I cannot say it for someone else.

I am still exploring how I feel with chronic illness. I was just diagnosed with Fibromyalgia and Raynaud's Phenomenon on Friday and I know that it has been difficult. It's one thing on top of another and I have so much going on already. But I learned to quiet my mind. I had suspicions and all I had to do was fight and wait.

Yes, I had to fight.

From the ER visits last year to telling a neurologist that she was wrong, I have cried and planned. I am also a natural researcher and I am pretty good at finding reliable sources. I have brought up many good points, but all people judge me on are my looks - my wide frame and round face. It took some doing for my PCP to even look over lab results too.

Fibro, Raynaud's and MCTD fight just as hard as I do and I am often down for the count after dealing with what's in front of me. Even when I sit down, I feel like not all of the weight is relieved. Sometimes, it is even painful and utterly exhausting. I am typing this blog post out, so my bare arms are touching my desk, which is cold. I have not gotten anything to cover it yet.

I had an appointment on Friday at a facility in Southington. I was nervous because I feared that I was going to be dismissed again. I read reviews about one of the personnel doing unnecessary work. I was surprised when I came into kindness and empathy. To me, it felt like the effort was worth it and that maybe I was the imposter in the wrong office. Of course, I was wrong.

The fight has not ended yet. There is much more that I've had to deal with. People think I am strong. Yes, I show a really good face the past couple of years. I give inspiring and encouraging words. I also know what it is like to be without. I know what life has dealt me already and I want to stop that cycle. I ran through several coping mechanisms and seek within everyday.

I am not the same person I was three years ago.

Because of that, I lost a lot of people. Thinking about it, as soon as I realized what I wanted in life and the boundaries, the rest was easy. Even with those I love, the one thing I noticed first is that hardly anyone reaches out to me. At all. I know that everyone is busy - careers, children, parents, health, traveling, anything! I have the same problems. I am everybody's back-up, though, and I have stepped up until I no longer could. For about 90% of people I know (blood family and in-laws mainly), that was not enough.

I was not kidding when I said I was called nasty things. Over-glorified housewife. A financial burden. Imagine hearing that for your whole life, and then having a chronic illness. The depression and anxiety alone can be crippling.

Not to say that I hate the peace. I love it actually. Sometimes, though, in the small parts of myself, there is a need for a good friend around my age (other than my husband). I gave so much of myself that I cannot give much more except for my books.

It is also weird of me to say this:

I do not do well with other women. I can relate and some are empathetic. I've had terrific conversations with women and even my therapist identifies as female. Honestly, I fit in better with the men. Strange to say that they understand the pain and do not compete. Most of my closest friends are male.

Chronic illness and trauma go hand-in-hand. What are your thoughts about it? If you have any chronic illness, how do you feel about it? Do you think, upon self-reflection, some of them are cruel?


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