Alopecia World
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Feeling defeated, frustrated, and depressed
Every time university is about to start up I start thinking about how I'm going to be wearing my wig everyday and how I am pretty much lying to everyone that I meet by hiding the real me. It's so frustrating because I've gotten so used to being bald at home after almost eight years, but I'm still terrified of letting the cat out of the bag at school. I'm so tired of trying to figure out when to tell people or if I should tell people. I hate that I let my alopecia limit what I do, but I just can't stop worrying about what I would do if I got a really negative response in a place where I have to go to everyday. I love playing soccer and a lot of other sports, but I've never actually used my campus recreation center because it is just too hot wearing a wig and I'm too petrified to go without it. I have lived in georgia for 5 years now, and I still haven't managed to tell any of my friends about my alopecia (although they probably have guessed by now since I have an identical non-alopecian twin). I have a thyroid disorder as well which can cause depression so maybe that is what's talking right now, but either way that's the way I'm feeling right now. I have so much resentment for my twin because she didn't get alopecia so the "why me" attitude is going crazy right now and I don't know how to shut it down. I just don't know what to do anymore. I feel like my life is just passing me by because I'm too scared to fully participate. I feel so trapped, but I'm also disgusted with myself. It drives me nuts that I still can't just move on after all this time. Sorry for the rant I didn't feel like making my family feel bad because they can't do anything to make it better.
Replies to This Discussion
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Permalink Reply by Cheryl, Co-founder on
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Hi Dielle, I remember being where you are right now. But I personally knew that I could not continue the way I was. For me in the wig, I was too hot, to uncomfortable and felt so unlike "me". To be stuck is a hard feeling, now the question is what is it that you want to do. Personally, I started slowly and I actually started backwards ;). It was easier for me for people to see me with a scarf and then a wig than the other way around. So when I joined a new gym, I would go in with my scarf, shower, change and then leave with my wig on. And I just started to expand on that. Every new place I went, I tried to wear the scarf first. If you are going away to university, perhaps you can consider "moving in" with your scarf and then going out with the wig. Then that gave me the optoin of switching back and forth. You need to find a way to start participating in your life again. I hope others respond as well and you get to chose the solution that works best for you.
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Permalink Reply by Rose Marie' on
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Hi
I've sent you a private message which I truly hope helps.
But wanted to add something here. I feel it's a personal choice and it's about matching what you feel on the inside with how you want to present yourself on the outside. Whatever works for you will be acceptable to others and if it isn't you won't mind because you will feel good about whatever decision you have made.
Hugs
Rosy
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I agree with Rose, the final decision is yours.
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Permalink Reply by Tallgirl on
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College for me was in a colder climate, and long ago, so maybe you won't listen to a word of this. Anyway, I wore wigs and hid my alopecia totally, using scarves for bed. I didn't do sports, and kept away from romantic clinches so I wouldn't be discovered. There were plenty of other things to do on campus besides gyms and sports. By age 20, my hair all grew in...so my last year I became a lot freer.
There is nothing wrong with being a private person medically but outgoing person socially. I joined a religious group, academic sorority, social sorority, Usher Corps for the theatre (free concerts!), and a professional association. I swam, camped, partied, danced, painted. Find more things to do, instead of stressing over hair!
Finally, I took advantage of the student health center to get counseling and Assertiveness Training. Worked great!
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Permalink Reply by Lorna on
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Hey Dielle, I can totally relate to some of your feelings. It's really tough but you need to work out what you feel most comfortable with....I know that's not really a great answer but the best we can do is make the best decisions for ourself. I have thyroid problems too. So can also relate to that. Not feeling inspired to say any words of wisdom but I am thinking of you! x
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Permalink Reply by Susan Innes on
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This is a tough time which requires a lot of courage and that courage will come when you know that the only way to obtain freedom is to let go of the thing that is shackling you. If you really feel a lot of pain from not participating in those activities that make you special, there is only one choice and that is to let your spirit free. Let me give you an example: A soldier returning home without legs wants to walk and participate in those sports that he or she enjoyed before the amputation. Some people are going to view those steel artificial legs as robotic and bizarre but this is a person who has decided to pursue their dream; they have chosen to survive and be involved no matter what others think. Those people of character will honor every sport in which they participate. I once had a coworker whose daughter had lupus (on steriods for the disease which left her very short and bloated) but she wanted to play baseball. The opposing team started to sing the Munchkin Song from the Wizard of Oz. Her teammates and everyone else in the stands booed and the team was removed from the league. She had been brave and everyone loved her for it. There will always be those who find strength in intimidating others but they will be the losers. Be a winner. Don't let others keep you from succeeding because of being different. One can always ask, "Why me?" But, why not you, or me, or anyone else. That is the challenge we are given. Try to think of accepting this as a challenge which can be overcome. Please don't resent your twin; she didn't have anything to do with this. It's also okay to be depressed over any loss. I know from not only having faced hair loss but a husband as well. Let the tears flow to release some of the sadness and perhaps anger but remember that you can choose to leave that trap. You can open the gate and let yourself free. So, don't be disgusted or so hard on yourself for having normal feelings. We love you for who you are and others will too:).
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Permalink Reply by Paul on
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Hi Dielle,
I don't have much to add from what others have already said. I had a similar experience but luckily I was able to room with my high school friend my freshmen year at college. I thought it anything happened and my baldness was exposed it would be safer with someone I already knew. I know that it is different for men and women but also keep in mind that at this day and age a university environment could be a really great and supportive environment to finally "come out" and be yourself.
Like others have said the decision is ultimately yours. best of luck!!!
Paul
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Permalink Reply by Mary on
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Hi Dielle - I didn't lose my hair until much later in life. I can't imagine how hard this must be for you to be at the university. Maybe my experiences won't help, but check out my videos, blogs and photos to see how I've gone (in 3 years) from being afraid to let anyone see me bald, to going out bald all the time. I WANTED to like wigs, but couldn't stand the heat, especially since I'm very active. I skipped an annual music and dance camp for two years because I couldn't imagine being there bald, and knew I couldn't wear a wig doing lots of dancing. I went back to the camp in 2010 and 2011, and it was fine. I'm NEVER going to let having no hair limit what I do again.
My experience has been that people accept me as I am. It's actually become something I feel "special" about, in a good way. I feel exotic and different. It's what it is, and my life has gone on.
I hope you'll find some help in the experiences of others here on AW. You're not alone. Hang in there.
Mary
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Permalink Reply by Dielle on
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I would just like to thank everyone for their responses, it really helps. Hopefully I can find some way out of this problem. I feel like I'm at a tipping point that I don't want and want to be at all at the same time. I feel like I'm pulling myself in a million different directions because I just can't seem to make up my mind if I'm ready to take the plunge. Every time I think today will be the day I finally go out without a wig I chicken out at the last second. I just don't really want to find out what happens if I do decide to go without my wig because all I have ever had are bad experiences without it, so now I think I'm just terrified. It's frustrating because I never used to care what other people thought, even as a teenager. It has only been in the last couple of years that I get really nervous. At one point I was wearing a wig to high school and playing soccer in a bandanna with people who I also saw at school, so I think that is where all of my frustration comes from. It sucks to know that at one point you could do something but you are stuck right now.
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As I've written here before (some people are probably sick of hearing this), I took baby steps. I remember the first time I walked to my mailbox bald. I kept a diary of the first time I went places: first time to the grocery store, first time to the gym, first time to the library. Then, after a little while, I stopped keeping track and went everywhere. It's really a case of fake it 'til you make it. I found (and still find) that if I hold my head up and act like there's nothing unusual about me, other people react the same way. Hope this helps.
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Dielle-
Your last reply changes my original impression about a solution. Mary is a wonderful role model for all of us, as are Tan and others. It's not easy for me to be out in public on a regular basis without a wig, except maybe to a clinic (or medical encounter when I'm not feeling well). You've already done what was needed (wearing the bandana) to participate in the important recreational aspects of your life and you know how it feels to be free of living without the fear of others' opinions, and, of course, now comes the frustration of feeling chained to a wig again. As suggested by Mary, I would take baby steps (when comfortable), testing yourself without too much fear of people's reactions (in public places where you can escape quickly if necessary) such as Mary's suggestion of a grocery store. I found it easier at places where I was less likely to run into familiar faces. But, as Tan also added, this may not be the time to change your image. The university does not sound like your high school where you would often be among the same people and friends; this is another transition in your life. One problem for me was wondering if I could return to the wig once seen without it, and the answer was yes; but, you already know that. We all face various transitional periods in our lives when decisions are more difficult (when we are feeling less secure). Take some deep breaths and concentrate on things that give you gratification because these will make you stronger. Bad experiences are easier to accept after having achieved more successes and we have a better image of ourselves. You have succeeded at things before and in good time, this problem too will be resolved; there is no reason to assume it has to be now. Hugs, Susan.
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Living without any fear of people "finding out" is an amazing thing. I felt so liberated once I got to this point.
The other thing I haven't mentioned here is that I found it TERRIBLY psychologically difficult to switch back and forth between wearing a wig and not. This may just be ME - but what would happen is I'd start to get used to the way I look bald (or in a scarf), i.e. hairless.
Then, when I wore a wig, I'd see my self WITH hair again, and go through the feelings of loss, anger, self-image confusion, more crying, etc. that I'd already BEEN through. In other words, for me, wearing a wig was just like picking the scab off a partially healed wound. (Sorry for the gross analogy, but it's true.) The best way for me to "get over" losing my hair was to stop seeing myself in fake hair and just get on with live as I now am, with a bare scalp, or a scarf at times. Does this make sense to anyone?
It may not be for you, but I offer this experience in case it will help anyone.
Mary
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