Fundraising for charities or non-profit organisations is a challenge to say the least. It is hard work to raise money for organisations when you are up against so many charities now all competing for the public’s spare change.
Eating disorder charities have the additional problem that eating disorders are considered by many in the general public as of little importance. As the stigma surrounding eating disorders persists that they are fads of attention seeking teenage girls, it is not surprising that these charities come low down in priority of causes to donate to when up against high profile issues like children’s cancer or people in poverty in the third world.
To raise money, charities need to become more inventive with how to organise fundraising activities and initiatives but some of the old fail safe measures are great to fall back on as more guaranteed income. One of the most common ways people raise money for charities as individuals or small groups is by sponsored events… undertaking a ‘challenge’ for money. Frequently these ‘challenges’ are exercise or activity based, such as running marathons; climbing mountains; cycling long distances etc.. For the majority of charitable causes these activity based sponsored events are absolutely fine and appropriate.
Before continuing, I will make it clear that I am not picking out any individual eating disorder charities or organisations in writing this post – there are several that this applies to. I also 100% support eating disorder charities. More money is urgently needed in the field of eating disorders to help raise awareness of the illness, educate professionals and the public, offer support to people with an eating disorder and their carers and to fund treatment and research.
My argument though is that for eating disorder charities and organisations, exercise or activity based fund raising initiatives are NOT appropriate.
Obsessive and compulsive exercise or lower level movement in eating disorders is a key disabling symptom for a majority of individuals. Compulsive exercise is even now recognised as a significant factor in the causation, development and maintenance of eating disorders across diagnoses.
Exercise compulsion is also identified as one of the last symptoms of an eating disorder to disappear and is a significant risk factor to relapse. In anorexia nervosa subtype alone, statistics demonstrate that compulsive exercise occurs in up to 54% of people; while ‘hyperactivity’ is even more commonplace in up to 80% of those affected (source).
In my battle with an eating disorder, I had compulsive exercise. Over the years of illness this manifested itself in a variety of ways; from being a gym bunny, to swimming, aerobics classes, cycling and to less intensive forms of exercise such as walking, yoga and pilates. Whichever form of exercise I was pursuing though, they were all equally compulsive in nature.
Like many with an eating disorder I also had ‘hyperactivity’ or obsessive lower level movment. It felt impossible to sit down, and I had a constant drive to be ‘doing’ or physically active in some way. Simple things like housework, even doing the washing up, became compulsively driven by an eating disorder seeking any way to keep me standing and moving.
For anyone with an eating disorder, it is very easy to be secretive about just how compulsive and driven these lower levels of activity are. People might be relieved that the person with the eating disorder is not out pounding the streets, so do not question their need to go up and downstairs 5 times in the afternoon or why the house needs cleaning everyday. If a person is weight restoring, these activity compulsions might not impact on their weight gain either so they are again overlooked by loved ones and treatment teams who look to physical status first.
Mentally, however, these activity and exercise compulsions are incredibly hard to live with. They are crippling and distressing. Despite this, the person with compulsive exercise will find a million reasons to carry out the activity, declaring a love for exercise or the necessity to be on the go, while inside there is such a large part of them that is screaming for someone to stop them.
It can be like living with a Sergeant Major in your head who will not let you stop no matter that your body feels broken. You cannot tell anyone how awful it is as they might intervene and you fear this will make the mental torture even worse.
During my attempts at recovery in treatment over the years, the compulsive exercise was always the main symptom that was never appropriately addressed and sadly was always the driving force in my full slide back to the eating disorder again and again.
As I found in my recovery, to overcome compulsive exercise, like any addiction or compulsion, a person needs to stop the behaviour and for a prolonged period of time to ensure that if and when exercise is resumed at a state of full recovery, it is neither driven by an eating disorder nor detrimental to their health and will not cause a full relapse. In the same way an alcoholic needs support and reassurance to stop drinking, people who have had an eating disorder with compulsive exercise or hyperactivity need full support in stopping these behaviours; to be reassured that it is safe to stop and resting is not unhealthy and to have loved ones around them to help with this.
In the case of an alchoholic, it is generally advocated that they never have a drink again due to the risk that there can never be ‘just one’ drink and I would say that the case is similar for the person recovering from compulsive exercise. Although they might not need to avoid all forms of activity and exercise in their future life, if and when exercise is taken up again post recovery, it needs to be done with great care. As stated earlier, people who do not address exercise in recovery or who resume exercise too soon post recovery have very high relapse rates.
We know too that eating disorders kill and so avoiding anything that may trigger a relapse has to be a top priority.
Taking all of this into account then, I do wonder why exercise based fundraisers are considered appropriate for eating disorder charities and so commonly used.
To me this is a bit like a charity for alcoholics holding a cocktail night or a lung cancer charity selling cigarettes to raise funds for their cause.
Over the years I have often seen images of people of questionable health proudly holding up their medal for completing a marathon or other sporting event to raise money for an eating disorder cause. People who are deemed ‘recovered’ from an eating disorder are encouraged to take part in marathons and other highly athletic sporting events to raise money. This is alarming:
Who is monitoring these individuals to ensure they really are safe to exercise and the activities they are undertaking are not being driven by an underlying compulsion?
Who is ensuring that all these activities are being more than adequately fuelled and even if the person is ‘recovered’ that they won’t be sent back into negative energy balance as a result of this exercise and trigger a relapse?
Who is monitoring their physical stability?
We know that eating disorders are prevalent at any weight, so merely ensuring a person is in the ‘healthy weight range’ falls far short of sufficient evidence that they are healthy enough to be exercising.
Eating disorders also kill at any weight. To highlight this point, I will link here to an article about a tragic case of a young woman who was deemed ‘healthy’ enough to resume exercise post anorexia nervosa and who died while on a training run due to an electrolyte imbalance (She’s not that Skinny is she?). Sadly, this situation is far from uncommon.
In the past I have spoken with eating disorder charities about their using exercise as a means to fund raise and I have been pointed towards their ‘guidelines’ which cite that people must ensure they are in a safe point of recovery to raise money in this way and IF they have current health issues, consult a medical practitioner first…. SERIOUSLY?!?!?
We are talking about people who almost certainly have compulsive exercise. They are not going to openly admit they are not far enough into recovery to undertake these events (I wouldn’t have done). Just like the alcoholic who will do anything to have a secret drink as the drive is that strong; so too for the person wanting to exercise. The problem with exercise over alcohol though is that our society generally deems exercise as a healthy and positive pursuit….
It could also be argued that exercise based fundraisers are ok, so long as it is not being undertaken by the person who has or had the eating disorder, perhaps it is being undertaken by a parent, a spouse or a sibling.
I can understand this argument but can you imagine if you have a compulsion or addiction which you are having to abstain from but you are living with someone who is being praised for and enjoying undertaking the thing you are trying to give up? People I know in eating disorder recovery who have spouses or siblings who continue to exercise find this incredibly hard to watch as it is a constant reminder and makes the disordered urges to be active much stronger every time they see their loved one put their trainers on.
In recovery and in overcoming compulsive exercise we need role models to demonstrate that resting is ok and support us to fully overcome this drive to be moving.
So after this very long post / rant, I would call for any eating disorder organisation to rethink their fundraising strategies.
Exercise and activity based events are all well and good but not when you represent a cause in which exercise is such a damaging part. So many with an eating disorder also develop compulsive walking which again can easily slip under the radar of those around us but is mentally damaging, so even low level activity based events such as this should be avoided. My eating disordered brain would have loved to undertake a fundraiser by having a good walk – LOVED it, and the world looking on would not have appreciated the potential harm it was doing to me.
Fundraising is challenging – very challenging – I do know this….
However, for an eating disorder charity, we must look beyond activity events…. There are many other ways to raise money and I know how vital those funds are but more creative ways to access those funds need to be found so there is not more harm done to the very people the charities aim to help.
… sponsored 24 hour couch and Netflix marathon anyone??