Becoming my own advocate

I haven’t written in this blog for almost three years, I know. Well, a lot has happened in that time! But I’ll spare you the details.

In these past few years I have learned a lot about myself and how my mind works. I have learned that I’m neurodivergent, that is, that my brain is wired a bit differently from the brains of people who are neurotypical. And part of my neurodivergence includes challenges with communication. It takes me longer than neurotypical people to process verbal information. It takes me longer to find my words and articulate what I want to say verbally. As a child, I was also extremely shy and had some social and sensory challenges. And those challenges have continued, to some degree, into my adulthood.

I remember the days in which I was nervous about questioning my doctors’ decisions. I went along with almost all of their decisions. I felt anxious about confronting them about decisions I was uneasy with. And I even put off calling them when I was experiencing a Crohn’s flare. It was extremely difficult for me to find my voice, and advocate for myself.

There were a few turning points in which I realized I had to find a way to befriend my anxiety and tell the doctors what was on my mind.

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Getting through the “why me?” days

I think we all experience moments of wondering why we have to deal with a particular health challenge — what is the purpose of it? We might see ourselves as “abnormal” and wish to just be more “normal.” We might look with envy on others who seem to have it “so easy” and wish that we could have some of that ease. When I did my dissertation research, “Why me?” was a commonly reported thought among women with chronic pelvic pain. Some even wondered why God had given them such debilitating pain and illness.

Sometimes we just reach a threshold of not wanting to deal with chronic illness or chronic pain anymore. All of our excellent coping strategies fall by the wayside because we’re just too tired to apply them. We feel mentally defeated in those moments. And we can’t seem to just talk ourselves out of them. The sense of defeat and demoralization is too strong.

When we are absorbed in the “why me?” of coping with a health challenge, it just seems awful. Suffering isn’t rational! The “why me” comes from the feeling of being sucked into a “me bubble” of despair.

So how do we get through the days in which despair seems overwhelming? Here is what I do: More

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