Chronic Illness & "determination to recover"

View attachment 16435 The press love recovery stories where the long time ill - through sheer determination and will power - make themselves well again.

These stories run with patient comments such as, "I was determined not to let this beat me." or "It was a very difficult journey, but I triumphed in the end." The statements themselves are likely true, but the press will often imply that the tenacity of the patient was the major key to recovery.

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A really excellent article articulating how many of us feel. I agree that these stories of 'triumph over tragedy' does imply the rest of us are not really that bothered about getting well and just need a change of attitude.
Great article. Years ago, our local TV stations aired numerous inspirational stories about a young woman who had cured her breast cancer with a positive attitude. As an ME patient with a similarly positive outlook, and no signs of recovery, I was skeptical. And, I felt insulted, with many of the reactions you so eloquently described in your blog post. Unfortunately, the young woman's cancer returned, and she didn't survive. The last interview with her was heart breaking. But, I was much more impressed with the grace and maturity she displayed while admitting she had been wrong to attribute what she now realized was a remission (and not a cure) to her attitude.
What comes first, the chicken or the egg? I feel that 'mental toughness' is a part of success in a pursuit of 'focusing' our energy to conquer a challenging goal (education, career, etc). But it's unrealistic to label someone as NOT being 'mentally tough' if they are chronically severely disabled (physical/cognitive); Our mental focus is taxed (maxed out) just to navigate thru the many day to day challenges we face (things healthy people conquer everyday without giving it a second thought). I believe that when we receive medical treatments, that enable us to feel better, we could slowly claw our way out of living in survival mode. Only at this point should we consider putting any pressure upon ourselves to see complementary medicine (massage, meditation, power of positive thinking, acupuncture, hypnosis, counseling, etc) as a benefit to help manage our day to day challenges. Complementary medicine is NOT a cure for ME, and should be viewed only it that light (would be self defeating and detrimental for us to see it as a cure).

I see the severely ill ME patients analogous to patients in the ICU of a hospital. It would be ludicrous to think that pressuring a patient into believing that the 'power of positive thinking', alone, will cure them at this critical stage.
Dear Sally,
I love what you wrote! As a former CFS/ME sufferer I can attest that the only determination, willpower and perseverance came from my husband who literally put his life on hold to help me recover. In the end what made my recovery possible was simple, plain science combined with an incredible effort on my part to follow the protocols created by my him. And yes I did go to see doctors but unfortunately in my case I almost died of the medications. As for my attitude, well, I tried to stay as positive as I could but I often had long periods of pure struggle. It was so much suffering and pain that it is hard to even think of a “I will conquer this” mindset. I especially like what you wrote “I'd love to see mainstream media stories focus more on the treatments themselves, and on how lives can be changed by them, than on the personal attributes and positive thinking of an individual.” I couldn’t agree more. Focusing on the treatment is the very reason why I decided to publicly talk about it. Up until recently I was just happy I overcame CFS/ME and was trying to make up for the time I lost. It wasn’t until a friend of ours insisted we share our protocol and make it available to others that we gave it a thought. At first we didn’t want to do it. We were too afraid of liability issues or being criticized. Then I realized that when I was sick I relied on other people’s blogs about CFS/ME and what they have done to cope to get through the day and it finally struck me – if by sharing what we did and making it available to others we can help one person it will all be worth it! Turns out most of my fears, including the one where I thought the protocol would only work on myself were unfounded. The positive attitude will always help but CFS/ME is not just exhaustion, your body is out of balance and needs support from science to heal.
Hoping my story (and treatment!) may help others:
Love and Health!

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