Anne tells us about her experience of living with CMN. Her journey has taken her a long way from her challenging early years in Tipperary.

What was it like for you growing up with CMN?
I grew up in the countryside in County Tipperary in the 60’s with my parents, my brother Jim and sister Brigid. I was aware at a very young age that I was different from my brother and sister.

We used to go to Tramore beach for day trips over the summer and as a child I remember rolling up my trousers to go paddling. The beach was very busy and I felt so conscious that people were staring at me.

How did you get on at school?
I loved music and art but school days were difficult. I used to go home crying to my mother and tell her that a boy called me a leopard, or a speckled breast thrush. I learned to hate any animal or bird that had spots and also couldn’t wear leopard/cheetah print clothing.

Self-acceptance and self-love many years later allowed me to see the interesting attributes of these animals and the thrush.

Can you tell us a bit about your teenage years?
There are many memories of not feeling good about myself as a teenager and it was the most difficult stage of growing up. My mother was a devoted church goer and we both prayed long and hard for a miracle that my skin condition would miraculously disappear.

Throughout my teenage years I would have loved to walk on a beach wearing shorts and not feel people would stare at me.

I gradually realised that I was meant to have a skin condition but that didn’t help the pain of being stared at, teased and finding intimate relationships difficult.

Was there any support available when you were young?
I had so many questions about my skin condition and I didn’t get the answers that I was looking for. My mother of course didn’t have the answers and I was very angry with her but she did the very best that she could, given the skills and resources that she had. Counselling and Psychotherapy was unheard of in the 70’s and 80’s. Our local GP told my mother that there was nothing wrong with me, except that I had extensive freckles on the trunk of my body.

What helped you through this difficult time?
I thrived on education and loved sports and drama. Going to a mixed school was the best experience for me as I started to feel attractive in my own skin and I had good relationships with boys in my class. It was also when I started to ask my mother ‘will boys like me’, ‘how do I explain my skin condition’, ‘will I get married’. I had dreams, I wanted to get married and have children, like my sister and my friends, but I was so shy and so self-conscious I never believed that a boy would really want to go out with me. I also wanted more from the small town I came from. I felt at that time that the people around me were shallow and I wanted to do better with my life.

How did you get on in your early adult life?
There was an element of running away and that is what I did for a significant part of my young adult life. I studied Computer Programming in college and worked in Ireland, London and the USA. I love to travel and did a lot of solo travel and easily made friends around the globe. A new job took me to San Francisco for 1 year in 1996 and it was here that I decided I wanted to find out more about my skin condition. This was the start of my journey into exploring who I really was. I had an interest in self-esteem and self-development. I loved amateur dramatics from a young age. I got involved in the theatre. I felt the stage was a very safe place to be, where you would never get teased or called names.

I later studied Counselling and Psychotherapy and then Dramatherapy. Studying psychotherapy was the best investment I made in life. It allowed me to heal from the past, look at the many gifts I was given, and see the joy that I bring to life and people around me.

Thats amazing! You have achieved so much. What about relationships?
I spent a lot of time worrying about intimate relationships. Difficulties did arise, which is normal for all humans, and some relationships were not right. I suffered the loss of my father when I was 16 years old and I lost my mother later in life. I truly believe that they are always looking out for me. I spent many years running away from life and from my home town that I thought was small minded, to now embracing it all and returning home after 30+ years.

How do you feel about life with CMN now?
Life has taught me a lot about myself, and my skin condition is only one part of me. My dreams and aspirations are a huge part of who I am. I have made sure that I fulfilled them throughout my life. I have amazing friends, a loving family, and confidence and love for myself (without the selfish element) and I am content to be the woman that I have turned out to be.

Thank you for telling us about your experience of living with CMN. It is so good to hear that you have such a fulfilling life even though you faced some early challenges. Just one final question How would you describe yourself?
A friend once described me as someone with great perseverance and determination. That’s me!

You mentioned earlier wanting to wear shorts without being stared at. Did being self conscious of your CMN influence how you dressed?
Yes, in a big way. I would always try to select long sleeved tops and full length trousers. I did go through very confident stages were I wore skirts just below the knee but when I felt eyes on my legs I would retrieve again until I was brave enough to try once again. I then learned not to be so hard on myself, and not push myself to wear skirts, t-shirts, or 3-quarter length trousers. I think the trauma of how it affected my confidence in my teenage and early adult years does creep in every now and again and as I am now aware of those feelings, I can safely challenge my thinking. For me, it’s about acknowledging how I am feeling, and realsing that people are people, they look, they stare, and it does hurt, but as I get older it hurts less and less and people will always be curious about someone looking different from them. It’s how I manage it, which is to talk to someone about it rather than internalizing the feelings and letting the situation take control over me. It’s easier said than done, but it does get easier.

What advice would you give a young person growing up with CMN or another visible difference?
I do think that if I had counselling as a teenager I would have developed skills quicker and would have been more confident in life, which would have allowed me to reach for the stars in terms of job opportunities and relationships. There is an abundance of psychological and emotional supports out there for young people to access and it has become fashionable now to be sharing your feelings and looking after your mental health. It’s the way to go, young people deserve to reach their full potential and reach for those stars!

What has meeting other people with CMN meant to you?
I have met some adults online through the Caring Matters Now group but have not physically met face-to-face. I look forward to this when I can go to the UK, next year for the conference or at an adult group in Ireland.

Meeting adults my age with CMN is about realising that I am not alone, have never been alone and being able to share with each other what it was like to live with CMN. Sometimes the medical experts don’t have the answers to questions I may have, but I have reached out to other adults in the US Support group who have given support and it was just nice to be able to get other opinions and support.