I thought I would share my story just in case it might help someone else, who’s going through the same things as me, feel not quite so alone. I lost all my hair 5 Christmases ago. Over a 2 week period, it was all gone, alopecia universalis. It wasn’t a total surprise as some winters in the past I had lost some hair on the top of my head but it always grew back in the spring.
I hid the hair loss from my husband for a week using head scarves and although I was complaining and upset, he thought I was over-reacting until I took the scarf off and he realised how bad it was. I was in Sweden at the time. My husband had gotten a job and moved there, I still lived in Ireland but traveled back and forth every two weeks to be with him in Sweden and still worked when in Ireland, my employer was very flexible which was wonderful. After a year of this, I decided to move over full time to Sweden which was a much better choice as living two separate lives was very unhealthy for me and my marriage.
I went home to Ireland and went to a wig specialist and got my first two wigs, synthetic, which I thought looked great and real although much later I realised looked like wigs and not hair. I was so relieved at the time to have what little hair I had left shaved off as it was so devastating constantly seeing it falling out everywhere, getting a new wig, and I just wanted to feel “normal” again!
I then went into a mental block bubble (that’s the only way I can describe it!) where I felt nothing for a year and a half and just got on with life. I ignored the stares and double takes from people and people talking to my head, not my face and people obviously talking about me that didn’t know me, it didn’t sink in. Until, as I said, June a year and a half later. I was in my therapist’s office in Sweden and I asked her if my wig looked natural or was it obvious that I was wearing a wig. She was honest and said that it was obvious to most people, especially women as it was synthetic and looked unnatural. Big shock! All of a sudden my world came crashing down. I went around for about 2 months like a headless chicken, mind racing about how the last year and a half was all a lie and I wasn’t normal. I looked in the mirror and the person looking back at me was a stranger, a mannequin, an alien, a freak. My sense of self-was gone, who was I?, my feminity was gone, my sexual appeal, my looks, my idea of who I was. That might sound very over-dramatic to most people but for others, with Alopecia I think they can understand that the actual hair loss is one thing and physically dealing with that is a very difficult matter in itself but the psychological effect goes down to the core of the being and sense of self.
It was a very difficult time, that’s an understatement! My mother was going through chemotherapy for breast cancer at the same time my hair fell out so we were bald together, ironic. She’s well again now, cancer free for 5 years, thank god.
I was very lucky that I was in therapy and I was able to talk through all my problems and get them off my chest. My husband could only listen to so much which I can’t blame him for and didn’t really get it and still doesn’t! He has been so supportive in nearly every way, he kisses my head and we laugh about it and still finds me attractive, which I was so anxious about at the start. For him indoors no problem, outdoors a different issue altogether! He was very conscious of other people’s reactions to me and when we went on holiday he asked me to hide my wigs in the wardrobe so the cleaning staff couldn’t see them. He was dealing with his own feelings about it and finding it difficult too on some levels. I was so angry and hurt. I expected I suppose naively that everyone around me, i.e. family, would be open-armed supportive but it didn’t work out that way for me at the start. My sister was worried about her children’s reactions to me, although they looked at me for about a minute, accepted me, we had a laugh and carried on as normal. They now think I look weird with hair! After that initial thought, my sister has been so supportive and protective of me. I felt my husband was ashamed of me in public, my mam said she knew how I felt and that we were both the same and didn’t listen to me at all when I tried to explain that her hair grew back and she always knew it would and mine wouldn’t and my best friend complained about Jade Goody’s bald picture in a magazine, that she didn’t need to see that kind of thing! My god, not only did I have my own stuff to deal with but I felt so weighted down by everyone else’s feelings and reactions. The only person, other than my sister, that really “heard” me and understood me was my dad, he actually listened to me, which was wonderful and I am so grateful for that.
I then bought natural hair wigs which are much better and although it took 3 or 4 different wigs to get there, I finally have one that suits me, looks natural and I find comfortable, which is not an easy task.
I had an “a ha!” moment one day in the gym in Sweden. I made myself take off my natural hair wig in the changing room and put on a synthetic one in front of everyone in the room. It’s much easier to work out in a synthetic wig as you sweat so much and it’s easier to wash more often. The natural one can’t be washed as often so I never wear that in the gym. There were three teenage girls in the room at the time and when I went outside to work out, I saw them pointing at me, speaking in Swedish, to some guys, about me and I just lost it. I went into a toilet and cried my eyes out for about 10 minutes. I looked in the mirror and said “Right, that’s it! Either you can be a victim all your life or you can accept this and get on with your life!”
Something clicked in me and from that moment on my life and perception changed. I took off my wig without any problems if people looked at me, I said hello, which automatically they had to say back which diffused things. When I went on holidays I took my wig off to work out in the gym as it was so hot and it’s amazing that if your behaviour is normal, then most everyone else’s is too, they accept it. People talked to me without hesitation and in some strange way maybe I was more approachable without hair! It was so liberating for me and I keep challenging myself every now and then to go a little bit further and be more open.
I decided not to deflect questions and to avoid the “elephant in the room” syndrome and tell people upfront my situation and people really seemed to appreciate the honesty. It’s a part of me but it’s not all of me. As my therapist said, “think of yourself as a lady who is bald that wears wigs because they make you feel nice”.
Over time as I was more open and accepting of my situation, my family’s feelings changed to match mine and my husband doesn’t have any issues now with me in public, I think he was picking up on my insecurities as well as his own but when I chilled out, he did too!
I could go on and on about all the little situations that have happened that have crushed me, annoyed me, made me laugh but maybe when I can get to a support meeting, which is difficult at the moment because I am currently living in Chile!, I will share them then.
I think the main message I want to convey is that although it was and is one of the hardest and upsetting things I’ve gone through, it has made me so strong and self-reliant. I found my inner strength, I have found my sense of self, I have a better understanding of other people’s all manner of woe’s, I’m less superficial and actually happier in myself than I was before I lost the hair. The no waxing and the wash and go showering are great! I would love my eyelashes back though!
Thanks for reading my story and hope to meet all our members when I can get back to Ireland.