Anorexia: “My eating disorder crept its way into my life.”

Hello Nykolas, thank you for agreeing to share your story with us here on Carenity.

First of all, could you tell us more about yourself?

Hello, my name is Nicolas, I am 36 years old and I'm from Tours. I am single, I have no children. It's difficult, with psychological problems, to find the person who can accept all this. In life, I love nature, everything related to the environment, the beauty of trees in bloom, the leaves that come back every year, water, ecology... I'm also a fan of manga, computers and animals.

Image courtesy of Nykolas

You have anorexia. Can you tell us how it became part of your life? Where do you think it stems from? Do you know what triggers it?

I have had full-on anorexia for 3 years. I had a period in 2006 when I reached just over 11 stones for 5 feet 7 inches tall. At that time, I started to lose weight very quickly in one month, I had lost over 20 pounds. Since then, I have always paid attention to my diet. 

Anorexia crept its way into my life. It's a disease that pushes us from month to month, from year to year, to eat fewer and fewer calories, to eat almost nothing at all... I am now at just under 6.5 stone.

I think anorexia is a feeling of unease. It's like saying: "I'm here, look at me". People are quite condescending about anorexia in my opinion. Except that when you fall into anorexia, it's complicated to get back on track. You want to get back up but you always slip...

The consequences are that you're constantly cold, your fat melts away, you're just skin and bones, skeleton-like. I have severe osteoporosis, basically my bones are falling apart and are similar to those of a 60 year old. This is the result from 2 years ago. I have to have another test this year which will certainly be much worse... My organs are slowing down, I have stomach aches, bloating, very slow digestion, permanent fatigue. My blood tests are not great but they are not getting worse. I'm losing my hair! In short, my whole body is painful, my muscles have wasted away. I have a hard time lifting heavy things or walking on flat surfaces.

What type of care are you receiving? Are you getting help? If so, what do you think of it? What would you like to see improved?

I've been in treatment with the university hospital in my town. I met a nutritionist, but they are not trained in my town for eating disorders. There is nothing specific or focused on ED, his recommendations were to weigh myself less and to weigh food less. Which I won't do, of course! Treatment doesn't get better than that in France. 

There are, of course, specialised clinics, but they are expensive, between €150 and €400 each day. Moreover, they use a "weight contract" treatment (the same as in hospital), which means that if you eat, they give you the right to watch TV or read. Otherwise, you get nothing! It's shameful in 2021 to use this kind of treatment. It proves that nobody really understands this disorder and are making no efforts to really treat it. I've always refused hospitalisation because of this and on top of that at 36 years old... I absolutely don't want to submit to this type of practice.

It's also genetic, research shows that. I met a psychiatrist who specialises in eating disorders and who could only see a way to "curing anorexia" through the antidepressants I've been taking for 12 years. It's ridiculous, no medication cures anorexia, only therapy can... 

I wrote to the French Ministry for Solidarity and Health. All I got was a "standard" reply telling me that indeed doctors are poorly trained and that there are few centres, and that's it!  

So, to answer your question, I think there needs be real training related to ED for doctors. There should be adapted centres where we could learn how to eat better with specialists, and review the hospitalisation methods.

I tried tDCS (transcranial direct current stimulation) over 15 days in Poitiers, in a clinical research unit. It entailed two electrodes, one placed on the scalp and one on the forehead, to treat depression and anorexia. Unfortunately it didn't work for me. 

I'm going to try rTMS (repetitive transcranial magnetic stimulation) for a month. I'm going to give it a try anyway!

Male anorexia and male eating disorders in general are not often talked about. Many eating disorders are attributed to women. Do you think this may have had an impact on your care?

Male anorexia is very little known because I think men are more "macho" than women and find it difficult to say they are ill. It's more taboo! 

But the word is beginning to get out, and it will certainly gain momentum over the years and we will finally have real statistics on anorexia.

What impact has anorexia had on your private and professional life?

In my professional life, it hasn't had any impact because I haven't worked since 2012. 

In my personal life, being single, it doesn't really have an impact either. Being tired and weak, I am not really in the mood to meet people. Given the low daily calorie intake, my brain isn't working at 100%. So I do what I can from day to day, waking up is already a miracle!

Are you able to talk about your anorexia with your friends and family? Do they understand it? Do you feel supported?

People are empathetic but they don't understand. You have to experience an ED to really know. I've distanced myself from my family because of it.

Do you have any other health conditions? If so, do you think they could be linked to your anorexia?

I've suffered from depression since I was 16, and I've struggled with OCD compulsions - which change over the years but are always there - since 9 or 10. My compulsions change every 3 or 4 years. They can be about numbers, about superstitions that I've always had, words, images, I try to remember everything. In my opinion, anorexia stems from these two illnesses, it's the unease that takes over...

How do you see the future? What are your plans?

To be honest, I have no plans for the future. With 3 mental illnesses, no girlfriend since forever, no friends, what interest can I find in life? I've even thought about assisted suicide in Switzerland or Belgium. I live from day to day, as I said, with such a low weight, to wake up and say that my body has made it through one more day is already a miracle! And I think that one day it will say stop!

What advice would you like to share with other Carenity members living with anorexia?

For all those affected by anorexia, if you have a loving family, don't hesitate to seek out support and someone to talk to. Even doctors you can trust. I haven't found one yet. Except in Poitiers, the doctors were empathetic but nothing more. It's also important to try out alternative treatments for those who respond well to them... Unfortunately that's not my case after the pharmaceutical treatments and antidepressants that have messed up my long-term memory.

Any last words?

My last word: anorexia is an illness that kills in the shadows. I would like this disorder to be brought to the fore in news programmes, magazines and the media. I am waiting for contacts that will help me! 

Researchers must continue their research on this disorder, which is far from being only in our heads, even if it is our inner voice that tells us to eat less!

Many thanks to Nykolas for sharing his story with us on Carenity!

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