Keep talking, but don't forget to listen

There’s a belief I want to challenge. One that prompts similarly phrased sayings that are tossed around frequently and readily, in an attempt to disrupt and ultimately lessen the stigma of mental illness.

“You wouldn’t feel ashamed of having cancer, the flu or diabetes!” “Taking antidepressants should be regarded the same guiltless way as a diabetic taking insulin!” “Physical illnesses hold no disgrace!”

Ring a bell? The medication one I hear most often. Taking insulin might be listed alongside treatments such as a cast on a broken leg, painkillers to nurse headaches, a plaster for an accidental wound. Offered as an aid that is seen as easy and without any questioning as to its need. 

I understand the perspective and the intention, but it’s so very inaccurate. 

Am I picking holes? What’s the harm, right? Wrong. It IS damaging. It adds to the mistaken regard of physical illness as entirely separate from psychological. While attempting to normalise conversations about mental illness, a regard for the emotional influence of some ‘physical’ conditions is being thrown under the bus. This is especially important in relation to ED-DMT1 and diabulimia. For those that struggle with an eating disorder and type-1-diabetes taking insulin is not an action that is thoughtlessly undertaken without fear or worry. In fact, it is far from, that fear can feel crippling.

The notion that there is no ignominy attached to physical conditions is a lie. This most related to the misconceptions attached to the presence of what are labelled ‘invisible illnesses’. Many people assume that if an ailment is not in plain sight it must not have any significant impact. This makes it harder to let some aspects of it be seen when they need to be. And honestly, the sheer principle that having a bodily malfunction that can never be fixed (unless there’s a cure) is not going to be mentally burdening is quite ridiculous.

There’s also the commonly held assumption that diabetes being like doing X and taking Y which will equal Z. This can often be based on interactions people have had with those that have type-2-diabetes which is treated by tablets and so rarely the cause of disabling erratic blood sugar levels. I mean, your friend tells you her grandfather is diabetic but it doesn’t let it affect him at all so why should it get you down!

Of course, it’s brilliant that the barriers around mental health stigma are being pushed through. Talking and overcoming our embarrassment over distress and anxiety and depression is a hugely positive thing, but that shouldn’t come at the expense of widening understanding of the link between chronic health conditions and emotional strain.

Moreover, if you don’t have direct experience of something you should always consider your words relating to it with care. Yes, we need to keep talking, but we also need to be listening more intently, with an acknowledgement that teaching is one success, but learning from others is another that is just as important.

By Claire Kearns.

Don't read below the line

There’s been a lot of coverage relating to diabulimia in the press just recently. Certainly in light of how largely disregarded the condition has been until now, despite its staggering prevalence. It’s great to see such acknowledgment, from the BBC article that brought a tide of traffic to DWED and the Indy’s comprehensive piece, both of which used quotes from our director and founder Jacquelline Allan. That girl knows her stuff and it’s so crucial to be getting accurate information out there, especially after numerous past occurrences of grossly sensationalist reporting . The death of Lisa Day has prompted some of this. It’s disappointing that such a tragedy is the one thing that brings forth attention, when all our continuous shouting merely falls on deaf ears. But despite that I know her family are determined to bring awareness to this fatal condition that caused the loss of their beloved sister and daughter. In turn, the newly opened service at Kings College London which will treat type 1 and 2 diabetics with eating disorders is hugely positive news which has placed diabulimia under a spotlight.

However, traffic can result in road collisions. By this I mean loud voices of the misinformed and uncompassionate. Those people that will skim a story but have already formed a negative judgement from the headline. A judgement that they want to push onto anyone they can, but most of all those that they see with a spot of vulnerability.

The best lesson is to never, ever read below the line. But it’s that self-sabotaging nature in me, and so I need this space to rant a little. Even if I fear I may just be preaching to the choir.

Eating disorders are not a result of stupidity or ignorance. On the contrary ,it is a proven scientific fact concluded through various different studies that the majority of sufferers actually have a high degree of intelligence. I have never met anyone with an eating disorder that is not smart, some to the point of intimidation. Instead, I have met so many talented people through treatment experiences and online support communities. These people can be great scientists, artists, writers.  

It is often the case that people that develop eating disorders actually think too much. Minds full of numbers and weights and ratios are not idle. Instead, they are over-occupied, fixated, obsessed. If you bring type 1 diabetes into the mix, the need to be clued up on nutrition and the mechanisms of your body is pertinent. You do not have the option to avert focus from any of that, and diagnosis can be a hugely overwhelming time. Furthermore, with diabulimia, insulin manipulation is a not a simple equation.

Manipulation is often the fuel of an eating disorder, it feeds and sustains it. You can become someone you do not recognise, and do things you would never dream of as a healthy person with a healthy mind. Deception is never a game for the idiotic, it is clever and sneaky. You learn to lie with conviction and run rings around those around you. You become the master of trickery. All the while you are blind to the fact that a mental illness is pulling at the puppet strings attached to your limp feet, legs and arms.

It’s not a choice. It is not a decision made with any rationality. Someone with an eating disorder and diabetes is not choosing to not take their insulin just because they can’t be bothered or want to throw their toys out the pram (in this case syringes and test strips!) They are not just being ungrateful for that crucial life source which is now so luckily available. The discovery of injectable insulin to treat diabetics is meaningful to everyone that has to rely on it to survive. But with a mental illness, with an eating disorder, survival is not a priority. It’s also not just “another label” that can be lumped in with anorexia and bulimia when it has characteristics that require treatment to be specifically tailored.

The roots of any eating disorder are deep and heavy. It isn’t an illness that just sits in a shallow pool on the surface but it is all consuming river. It is not vanity, or selfishness, or a fad. It is not just about appearance. Everyone that suffers from an eating disorder will have their own stories to tell and different reasons as to why they developed one. Often these psychological origins can be tangled and extremely difficult for the sufferer to try and unravel. 

“All diabetics have to do to stay on top of their health is take insulin” read one comment beneath a recent article on diabulimia. Firstly, this shows a huge disregard for the impact of type 1 diabetes as it is about so very much more than that. Secondly, again, someone with diabulimia isn’t just a diabetic, they also have a mental health disorder, meaning they do not think logically or the way that any mentally well diabetic usually would.

Ultimately, all I ask is that if you don’t know about a condition such as this, if it’s something that seems beyond your scope of understanding, please do not automatically judge. Do not assume. Instead, listen, try to learn, have some empathy. You do not know the influence that harsh, unkind words can have.  We are not all delicate flowers and Dave or John from Manchester and Bognor Regis aren’t necessarily going to bring forth tears. Still, ignorance spreads like wildfire, and if someone we care about adopts a similar view, well yeah, that can hurt.

I’ll end this with a suggestion: Just don’t read below the line, especially if it’s The Daily Fail online.

By Claire Kearns.