Tess
I didn't know I had Neurofibromatosis until I was six. I've been learning more about it ever since.
I don't mind living with my condition as it doesn't show in a big way. I sometimes get annoyed because some of the people I know treat me like a baby. There are some advantages though because I can get out of a wet and windy PE lesson at school.
I spent lots of time in hospital but every visit I've enjoyed because of the lovely nurses.
In the next year I'm going to collage to study childcare to learn how to be a Play Specialist. The time I've spent in hospital has inspired me to do something with children in the same situation as me.

Mabel
When my Grandaughter Kerri was six months old we discovered she had a problem with her legs she couldn't put her weight on them, we athl thought it was dislocated hips.
However, after many tests we were told she wouldn't walk and if she did she would be very clumsy, but she proved them wrong, by the time she was three she was walking.
She was just a toddler when a mark developed at the back of her leg it was thought to be infantile eczema and that it might go away, but it didn't.
Then there were brown marks appearing on her body, so they did a biopsy on the leg and that was when we were told Kerri had Neurofibromatosis.
By this time she was seven years old. Luckily she has very little marks on her face. Kerri is very active and loves her school sports. Her teacher says she is the only one that runs the the whole circuit at cross country. The others have to stop for a rest.
We are very proud of her and the way she copes. Kerry is now twelve years old and turning into a beautiful young lady.

Marie-Laure ARMAND
Psychologist
NF1 Reference Center
Henri Mondor Hospital. Créteil (Paris). FRANCE

THE BURDEN OF INVISIBILITY

I have been a psychologist in the NF1 Reference centre in Paris for one year.
I would like to share with you a few aspects of my short experience.
As Dr Wolkenstein said, visibility is one of the major complaints with NF1.

It has many consequences: it affects identity, self-esteem, social relationships and behaviours.

NF1 Visibility and other people reactions

NF1 visibility exposes to the reactions of other people.
Those reactions are mainly astonishment, reject, or fears.
They come through behaviours such as, staring looks, going away, or questions like: what is the matter with you? Is it contagious?
Especially little children. They easily say what they have on their mind.
Some patients told me they hate children because of that.
Some avoid places where they may meet children. They don’t go near schools, in gardens, to protect themselves from these painful confrontations.

Other people reactions, questions … are an additional burden.
It makes people feel as if, they were responsible for what they show,
and that they must say something about it.
It feels like having to justify what they are. It feels unfair.
It is like a violation of their privacy; a breaking in intimacy.

Every child, around the age of 4, lies.
Before that age, children are convinced that their parents can know everything about them, that they can see everything.
Through lying, they experiment this opacity, which helps to grow as a separate person.

Our freedom settles in the possibility of hiding to others what we choose to hide; In French we say: to have a secret garden.
This is one of the major conditions of our integrity. The reassuring proof that we exist independently of others.
This fundamental freedom is attacked through those questions related to NF1 visibility.

On the other hand, I am thinking of a young boy, 20 years old, who has very few visible symptoms of NF1.
This boy never said to anyone he has NF1. He does not want to tell his friends because he fears they would not like him anymore, or, that they would behave differently with him.
He feels he is keeping something important back from his friends.
He feels dishonest, unfair to his friends.
He feels like a liar.

He has a “light” NF1, medically speaking, not visible, but, his mind is invaded by talking or not talking about it.
He is psychologically haunted by making his NF1 visible by talking about it, but, he does not do it, fearing a loss of love.
He has difficulties of concentration. How could it be otherwise?
In his case, the burden of invisibility is heavy.
By the way, his professional dream is to become a great optician, as if, he wanted to show the world how to see.

NF1 Visibility and identity

NF1 visibility makes people feel different, and therefore it affects identity.

For example, there was a young woman, 27 years old, who had a plexiform neurofibroma on one eye.
She was laughed at during her youth, so many times. She suffered a lot from that.
Hiding herself and isolating from others were behaviours she adopted to protect herself.
The more she tried to make herself as invisible as possible, the more she was feeling unseen as a person.

She had successful surgery, but, she felt the same and continued to hide herself.

We met a few times.
One day she said “I realise, I was like a walking eye”.

Visibility had interfered with her identity.
She was identified to her symptom, as if, she became her neurofibroma.
Although her dearest wish was to have friends, she realised that she was reluctant to accept compliments from people and that she was distrustful towards anyone who was nice to her.
As if any kindness was likely to hide mean intentions.
She realised she built a wall between her and other people to protect herself; a wall, which eventually had become an impediment to her quality of life.

Becoming aware of all this, allowed her to feel herself differently and to get involved in new relationships instead of staying lonely.
In that case, analyzing how visibility and invisibility intricate made it possible for that woman to modify her vision of herself and to handle her life in a more satisfying way.

Exposure

NF1 visibility gives a feeling of being exposed.
This is a very strong and harmful feeling.
We must not forget, that exposure was in the past one of the punishment from justice.
A kind of torture related to a fault.
So, being exposed makes people feel guilty. Guilty of what?
The feeling is there, but is not related to any identified fault.
This feeling leads to another feeling, injustice, which makes people feel as a victim.
One can easily understand that having both, feelings of guilt and feeling victimized is a very difficult and painful situation. How does one deal with it?

A few words about guilt and visibility.

NF1 is a genetic disease.
Genes make us what we are, they are our intimate biological identity, a kind of deep personal signature.
Genes are related to heredity, to our origin, family, where we come from.
Genes are not visible; they are hidden in the heart of each of our cells.
NF1 Visibility exposes this hidden part of ourselves.
Showing what is supposed to be hidden, even unwillingly, is equivalent to revealing a secret.
Psychologically it is like having committed a transgression, a fault and may explain the consequent feelings of guilt

Conclusion
As I tried to show, very briefly: the difficulties related to NF1 visibility are much wider than what is visible.
It means that healing should be healing beyond the body, caring for the wholeness of the person.
Associating a psychologist to a team in charge of NF1 shows this concern is taken for granted.
The possibility of talking about one’s suffering, providing time and place to acknowledge this suffering, is very important. It means being recognized in one’s humanity.
It gives the possibility to build outlines to a vague and wide distress, to know it better.
It helps to identify how one is involved in it.
It enables developing a new vision of oneself and to better control one’s psychological life.
It helps to overcome difficulties through more accurate awareness of one’s possibilities.
There are always possibilities.