Hello there!
I have been spending the last few weeks recovering from a serious case of bronchitis and pleurisy. not fun.
So lets catch up.
In my second to last post I talked about how it felt to go through the first days of diagnosis, and there are a few things I need to mention. I have an amazing Doctor. He is caring and compassionate, and I believe, he is the tool God used to save my life multiple times. I am not an easy patient, I get nervous and frightened and at times my fear overrides my ability to reason, and take action. In those times he is able to pull out of me how I feel about my treatment plan. So, when I second guess my decision later I am able to rationally look back and find renewed confidence in the treatments we use. I am blessed that I have a great support system now. I have also empowered myself with knowledge. The bad days aren't as bad as they used to be. When I am sick I am reminded of all the people who were there for me and helped me avoid the mine field of "destructive support" verses "real support".
Today has been a long day for me, not feeling well and recovering from a prolonged infection it feels like it did being stuck in a hospital bed for so many months. These are the times where I feel most confident that if I can help even one person to understand treatment options and early detection and screening it will be worth it. every shallow breath, every tear, every scar. In those early days, women were there for me while I was at the clinic. Women who had been where I was, where I am. But finding support must be done with caution. We are hearing more and more about a small group of survivors, and those caregivers who are left behind, who for whatever reason want to tell the scariest and most upsetting stories to current patients. I call this 'destructive support"
Why is this scary to me? There are many patients who are terrified of treatment and recovery because of horror stories they hear from others. I have had the same experience. When I'm out, wearing a scarf or with my head exposed, people want to talk to me. They tell me there stories, sometimes very tearfully. Sometimes it's wonderful and I am glad that they felt comfortable talking to me. I feel like we both leave a little lighter than we were. When they approach me, they talk about lost love ones and the upset they have endured. I wonder sometimes, if they received the "real support" they needed during a time of intense strain or grief. Sometimes though it's uglier. When new patients begin the process of treatment and recovery, they need lifted up, and so do their families. The last thing they need or want is to hear horror stories. "My aunt died from that, she was in so much pain we just had to let her go". To many times they reach out for support only to feel trapped in a group with people who have an arsenal filled with scary stories. Support groups are out there, for patients and caregivers, but if you attend and find yourself on the end of everyone else's horror stories, feel free to excuse yourself and find a support group that focuses on "support". Take time to empower yourself in the midst of your own nightmare.
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