I receive many moving emails and am always inspired by the courage of cyber-sufferers battling invisible chronic illness as they struggle to hold their lives together in the face of disbelief, especially if they have yet to find a diagnosis. The following email was particularly moving.
I found your site after a search, and read your story. It brought me to tears. It sounded like I was writing it. Then, I sent it to my husband, who is working out of the country. It brought him to tears, and for the first time in 17 years, he asked me “how are you doing today?” He finally heard me, saw me, through your words. I cannot tell you how freeing that has felt. I have never felt supported fully by him, and end up pushing through and shoving down silently, as he oft gives me the “you might be crazy” look. I have been diagnosed with Fibromyalgia and Undetermined AutoImmune Disease, as well as leaky gut, but even with that…many times I felt like he thought it was all in my head. Christina
Thank you Christina, for articulating how challenging relationships and chronic invisible illness can be. I’ve often complained that people do not believe I am really sick. Recently I realised that I had mistakenly believed that my words could convey my story. Instead I have learnt that doctors, friends, family – don’t really listen to what you say, they judge your health by how you look.
The unfortunate outcome is that many think that they know better than you do, how you are. You might wonder how I claim to know what they think when I’m not a mind-reader? Because their behavior reflects it. This doesn’t augur well for most relationships and I constantly admire those who have sustained theirs, as mostly I’ve not been able to rise to that challenge.
I used to think it was the fact that I had not quit work that caused people to dismiss my illness. But then I read journalist Leigh Hatcher’s book I’m not Crazy and realised that you are treated much worse if you stop work, still look perfectly normal and the doctors can’t find anything wrong with you. After a long journey Leigh finally discovering his liver wasn’t working properly. He has now recovered but still struggles to come to terms with those who doubted him.
In contrast, No Poster Girl is visibly ill. Emaciated and wheelchair bound with so called chronic fatigue. She writes about hating being told she’s brave like she has some kind of super-human power to cope when others don’t. Newsflash: she doesn’t have any choice. Nor would you if you drew the wrong card in a health lottery.
Her husband writes about the exasperation he sensed in the early days when people seemed to resent that she didn’t have a proper disease. He is a philosopher by training and reflects on the evolutionary requirement for sick people to ‘get better or get out’.
Those who got sick and got better could keep up with the tribe as it wandered across the savannah; those that died could be missed and missing them posed no further danger. Those who get sick and don’t get better are a recent invention, held together with pharmacology and surplus nutrition, and no one is born ready for this sort of story yet. How could you be?
In fact “You look well” and “You’re so brave” are different sides of the same dismissive coin, seeking to distance the speaker from being present to the pain of another.
I still have a way to go in finding peace around this issue, however have at least recently found humility. Irene Levine, a clinical psychologist asks Is a friend’s response to your loss or serious illness a litmus test of your friendship? It is an insightful article. While I was reading it I remembered a friend with no shortage of friendships, telling me that not one called her when her mother died. I knew that I was one of the friends who didn’t call. Why? I reasoned that bereavement was a private family matter and in her place I would want to be left alone. If I’m really honest, I was also confronted by the awkwardness of not knowing what to say.
However after having experienced the grief of losing my good health, I no longer accept either of these excuses and have belatedly apologised to my friend for not calling. These days most people have text, email and voicemail to take care of their communications when they don’t feel like talking. All I had to do is call and say “I’m so sorry to hear about your mother, is there anything I can do or would you prefer to be alone?” At least she would have known I was thinking of her and that support was available if needed.
I am humbled by the realisation that I too have not always been the best friend. The bottom line is that there is no excuse for not asking how you can support someone through a difficult time, especially when their pain is invisible and you can’t be sure what they need. Advice for friends, partners & family? Don’t kid yourself that you want to help if you have never asked – and quite possibly have never really listened.
Psychologist Tamara McClintock Greenberg has written an excellent article on the topic Providing Support: How To Talk About Illness Part 1 and Part 2. Her advice is to “Be present and try not to say offensive things”. That has inspired by next post on How Not To Say Offensive Things.
It takes a great deal of courage to stand up to your enemies,
but even more to stand up to your friends.
J. K. Rowling
If you enjoyed this post you might also enjoy How not to say offensive things to those with chronic invisible illness.
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