How we choose to live with illness

In between all the tweets about the Golden Globes, my Twitter timeline was literally blowing up tonight about a certain issue.

Some background:

  • Lisa Boncheck Adams is a woman in New York living with Stage 4 breast cancer. She often tweets and blogs about her daily life, treatment she’s receiving and other issues.
  • Emma G Keller is a writer for The Guardian. She wrote this article about Lisa’s use of social media. She compares Lisa’s use of social media to funeral selfies.
  • Bill Keller is an opinion writer for the New York Times. He also happens to be married to Emma G Keller (previously mentioned). He wrote this opinion piece over the weekend about Lisa’s use of social media and her “fight” against cancer.

I believe that Lisa has every right to not only seek out any treatment that can help her live and to document the process in whatever way she wishes.

My biggest problem with the Bill Keller opinion piece is his comparison between Lisa’s fight and his father-in-law’s choices about cancer — as if one is better than the other.

I have been criticized in the past, even by some close to me, for sharing too much information about my health struggles. In reality, what most people don’t realize, is that I only share a fraction of what I deal with every day. I try to keep my social media channels upbeat and not full of negativity when some days being negative and a big grouch is all I feel.

I also have chosen, at the moment, to live my life medication free. I could be on a whole pocket of pills for the pain, muscle cramps, acid reflux, digestive issues, poor moods related to the other issues. Instead, I’m choosing to live a medication and pill free life. This is my choice.

Does it mean that the pain is higher than it could be if I was on something stronger than Advil? Yes. But, I don’t like what pain medication does to my brain so the pain is a better trade off.

Does not being on anti-depressants mean that my moods are a bit more variable than they would be if I was on pain meds? Yes. But, I was tired of dealing with the side effects of the anti-depressants — including the weight gain — and also feeling like I needed to be on something to live a normal life.

However, I know many people with EDS and other conditions that cause chronic pain, mood issues and other programs and I applaud their efforts for getting the treatment they need to make it through their day. I feel so bad when I hear stories about medications being taken off the market or restrictions being put on medication that makes it harder for people to get treatment they need.

We all have the right to face life and death in whatever manner we choose. If anything comes out of the discussion over Emma Keller and Bill Keller’s pieces I hope it is that there is no right or wrong way to deal with illness.

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