On success in chronic illness

Keeping up with the Joneses comes in different forms. There is always a danger of getting stressed out when you compare your achievements to those of others, including when in sickness. Being chronically ill, I used to be drawn towards amazing and inspiring stories of chronically ill people who are doing so much in spite of their illness or who are responding amazingly to some treatment strategy or the other. Well-meaning people also take to forwarding me inspiring stories.

It took me time to understand that after a while, the inspiring stories can also become stress-provoking ideals. It took me time to accept that each person with hypermobility syndrome has a very different set of symptoms and disabilities; very different responses to treatment; and a very different set of concerns and objectives for their lives. I must individualize my case, my body, my problems, my strengths, my limitations and my goals; and my management strategies must cater to these goals and within these parameters.

“Leading a healthy lifestyle” and “being into spiritual things” are some of the new social trends that sometimes create peer pressure. Lifestyle ideas can appear to be non-materialistic and health-promoting, but they can foster consumerism, stress and discrimination. I have been into many meditation and mindfulness since my childhood, much before it became a fad, because I was born with an anxiety disorder and I happened to have a good yoga teacher at school and meditators in the family. By twenties I was into “healthy lifestyle”, much before my peers, because my body had started giving away, and when there is no visible illness, you are to blame, right? You must have a bad lifestyle to cause these health problems. So I have seen how these personal health-promoting choices, became pop culture over the decades. I think it is inevitable to promote and sell them, but they must not be used to make someone guilty for not being into them.

(Read more about the victim blaming and consumerism aspects of “Lifestyle” in Lifestyle in Medicine by Emily Hansen and Gary Easthope.)

Above all, it does not help to compare myself with high achievers, whether healthy or disabled or sick. Many people I know think it is weak of me to give up on a good career because of “back pain issues”. “Being amazing and inspiring in the face of challenges” is something I cannot have as a goal. I was not particularly astounding when I was relatively healthy and suddenly my disabilities are not going to turn me into a monument of inspiration to the world. I am just who I am, and I am a source of love, friendship and inspiration to a close few, and that is enough for me. Like before I became chronically ill, I must stick to my philosophy summed up by the Serenity Prayer.

Below is a wonderful post on a similar theme, by Alexandra Scott, that has also been published in themighty.com.

Alex and Ellen's T(alkS)Pot

Mornings like this I find myself floundering. For the second time with this illness, I find myself detached from the outside world. After months of striving to balance an ever- decreasing workload with an ever-increasing symptom load, I stepped back to make my health my number one priority, something which my body no longer deemed a choice. On the one hand, it feels reasonable to wait to return to “the world” once I can shower, prepare food, do therapeutic exercise, and otherwise maintain my day to day life with a reasonable symptom load. When I try to perform above my capacity day after day, and my symptoms are consistently high, quality of life suffers steeply.

Connecting with an online community of other “chronies” (as I’ve started saying) fosters both solace and insanity in my head. There are many success stories and endless promises that certain lifestyle changes, combined with acceptance of…

View original post 730 more words


About Hypermobility Syndrome India

I am an Indian woman with Ehlers Danlos Syndrome Hypermobility Type (EDS-HT or hEDS). I have been living with this disease all my life, and fighting the manifestations blindly without knowing why my body was a living demo of textbooks of different branches of medicine. Getting a diagnosis at 38 years of age opened up the path for my emotional healing. I aim to raise awareness about hEDS, chronic pain, invisible illnesses, mental illnesses and invisible disabilities, and share my experiences through my blogs.
This entry was posted in Chronic Illness, Daily Life Challenges/Tips, Disability, External Links, JHS/H-EDS and tagged , , , , , , . Bookmark the permalink.

One Response to On success in chronic illness

  1. Mel (Hippo256) says:

    I completely agree!


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