My experience of anorexia helps me help other causes

Someone who has personal experience of a cause can be a powerful advocate, says Martin Edwards

Martin Edwards
Martin Edwards

To be a truly effective charity leader, is it helpful to have a close personal experience of your cause?

One can see how someone would be a more powerful advocate of, for example, an adoption charity if they themselves had experienced adoption. Similarly, experience of addiction or special educational needs might confer significant knowledge and credibility on leaders in those fields.

My own experience of acquired brain injury would, I think, have given me an advantage if I had ever worked for a head injury charity. To a lesser degree, I might also have had something significant to contribute to sight-loss charities, due to my the experience of blindness in my family.

However, there is one cause where I would fear to tread, because certain experiences can be just too raw. In my case, it was 20 years before I was able to tell even close colleagues that I had once suffered from anorexia, and I have never before divulged it publicly. This was partly because of prejudice about the illness - but also because it took me on a headlong descent into hell.

Had I ever worked for an eating disorders charity, I could have spoken with the total conviction of experience. I would have tried to explode the myths that anorexia is an affliction that affects only girls, or that it is some kind of immature or vain lifestyle choice.

I could have explained that it is often not about body image or food, but rather about asserting control over one aspect of one's life when other aspects are spiralling out of control.

I would have encouraged employers with staff who suffered from the illness to support them sensitively, rather than to discount them as weak, mad or just plain inconvenient.

I would also have advised those employers that the same drive and self-discipline to endure hunger could, with the right focus, one day become the hallmark of a hard-working high achiever.

Maybe I could have helped more sufferers to rekindle the fading embers of their lives by reminding them how much darker the world would be if their light were to die. I would have urged them not to regret lost happiness - for happiness returns, imperceptibly, when unbidden. Above all, I would have advised them not to rage against themselves, but to realise that the path to recovery, although long and jagged, lies in finding control among the small steps forward.

On the other hand, such an intensely personal experience might have been a hindrance to me, because it carries with it the risk that I might have taken setbacks too personally or failed to listen to other opinions.

In any case, it cut me too deeply. I use my experience of the illness to help other causes in other ways, but I choose not to reopen my old wounds for a daily living. There are other ways to change the world.

Martin Edwards is chief executive of the children's hospice Julia's House

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