Modern western society is heavily influenced by Christian biblical ideas, which in turn came from the ancient superstitions of the culture in which the bible arose. One of these is the notion that illness is the result of some kind of sin. Essentially, this says that we are sick because we are bad people who do bad things. Even though few people nowadays are callous enough to acknowledge this idea explicitly, it still forms part of the thinking that underpins western society. Old superstitions can take a long time to really dispel.
In biblical times, people who were ill were considered “unclean”, and ostracised from other members of society. Evidently people had worked out that some conditions were contagious even long before any infectious agents were discovered. Stigmatising and segregating the ill helped contain the spread of disease. Nowadays we have a better idea of what illnesses are contagious and what the underlying causes are, but nevertheless the stigma remains. So it’s easy to end up feeling ashamed of being ill.
Western society values people who are strong, independent, healthy, and productive. Chronic Fatigue makes me feel weak, I become dependent on other people, sick all the time, and I’m no longer capable of achieving what I would like to because I don’t have the energy. I worry that other people will think I’m simply lazy, or depressed; and the mental illnesses that often accompany Chronic Fatigue like anxiety and depression have their own set of stigma attached despite being astonishingly widespread.
I have been involved in personal development for many years, since long before I became ill. While many people in the personal development area can be wonderfully supportive, I have also found others who were quite intolerant when it came to chronic illness. On one level, books like Louise Hay’s You Can Heal Your Life are excellent and offer hope that we can and will get better; but on another, the same ideas can be shame-inducing if you happen to be trying hard to heal yourself but getting nowhere. I have been told that I would wake up cured tomorrow if I simply believed that it was possible, and been berated by people who couldn’t handle the idea that I could be sick through no fault of my own. They assumed that there must be some secondary gain behind my being ill, some subconscious process I wasn’t aware of, or some lesson to be learned that I still hadn’t got. All these things can be true to some degree, but they can also be used by careless people who just end up rubbing salt into our wounds. Some treatment programmes are even based on the idea that we’re not actually ill, but it’s just something that we create in our minds.
I resisted joining any kind of Chronic Fatigue support group for a long time. After all, who wants to hang out with sick people? I wanted to be out doing all the fun stuff I used to enjoy with my regular friends. However, I found that joining a support group lessened my sense of shame about being ill. Here were people who understood what I was going through. I didn’t need to justify how I felt or why I didn’t have the energy to do everything I wanted to do. They understood without judging, because they’d been through it, and were still going through it themselves.
I also found it very helpful talking to people who had suffered from Chronic Fatigue in the past. Not only did they understand what I was going through, but they also offered me hope that recovery was possible and that there is going to be life on the other side.
6 Comments
Carlos · January 19, 2017 at 5:24 AM
Hi Graham,
Very interesting and inspiring blog. Kudos on identifying, and proclaiming in public (“for shame!” 😉 the links between systemic disease and underlying psychological difficulties. I am not a CFS sufferer but was recently diagnosed with celiac and chronic recurrent mononucleosis, which was once thought to be CFS.
Anyway I am going through intense therapy and EMDR. Something that really set off a light bulb for me was the ACE questionnaire (Adverse Childhood Experiences), have you heard of it? I read one of your stories about your parents’ relationship and it reminded me of my childhood. The questionnaire helped me to fully acknowledge the level of trauma in my past: without that acknowledgement, there was no way to reconcile my past with my (and the world’s?) assumption that there is nothing wrong with me, I just need to “get over it”, “pick myself up and move on”, etc. The problem is, as you talk about in your blog, that you can’t just walk away from accumulated trauma, you have to work it out.
Thanks, really happy to meet another person making these important connections!
Graham · January 19, 2017 at 12:46 PM
Hi Carlos,
Well I’ve heard of it now. 🙂 I’m also going through EMDR at the moment, and have been experiencing a lot of trauma release even over early life events that I’d talked over and over in therapy for years. That stuff can cut deep. The other thing I’ve noticed is that one original trauma, like my parent’s relationship and the communication style that made it so frightening for me, leads to others down the track, like social rejection when I unwittingly applied the communication style I learned at home in my relationships with other children. Didn’t work too well.
Turns out you’ve got to heal both the initial trauma, and the follow-on ones to be really free.
I’ll write more about my experience with EMDR when I’m out of the long, dark tunnel.
Thanks for dropping by,
Graham
Craig Nicholson · September 12, 2016 at 12:37 AM
I just read this after clicking through from a more recent post of yours. This is a really good and nicely-written observation of shame and the role it plays in illness and society. It’s a word which I only recently came to recognise the importance of and I think it’s key when it comes to exploring the origins of this, and many other illnesses. Shame is sneaky. It doesn’t like light and lurks in the shadows of ourselves and society. I believe it is at the core of illness. And that it is self perpetuating. I’ve been ill my entire adult life and still feel ashamed of it. It’s rife in society and governments play on it. Here in the UK the government demonise the vulnerable and cut whatever they can get away with in benefits. And they can get away with a lot, because we’re an oppressed bunch.
There’s a line in the film The Beach which has always stuck with me because I think it sums up a general unspoken approach to illness: “Get better or die. It’s the hanging around in between that really pisses people off.”
Graham · September 12, 2016 at 4:13 PM
Thanks Craig. I recently heard neuroscience researcher Mario Martinez (author of The MindBody Code: How to Change the Beliefs that Limit Your Health, Longevity, and Success) in an interview mention that shame has an inflammatory effect. This makes sense when you think that our faces tend to go red as they’re flushed with blood when we experience shame. Brene Brown’s TED talk on Shame, which focuses primarily on the mental health implications is one of my favourites. It’s not surprising that it can make us physically sick too. She makes the point that people with a lot of shame rarely talk about it, and I believe this is the antidote. If you’d like to talk more about yours, drop me a line.
Cricket · May 10, 2011 at 2:32 AM
I appreciate your blog and comments very much. The words made me feel understood and not alone. I was wondering if you had any suggestions for the online support group?
Blessings to you !
Graham · May 16, 2011 at 1:24 PM
I’m not really sure what you mean; what kind of support group are you looking for?