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Hello everyone, wonderful to meet you all!
Sorry to jump straight into things, but I honestly don't know how to start this....
Just a bit of useful side information: I have suffered from auto-immune diseases my whole life. I've had chronic severe hives since the age of 6 (which have dissipated with age, yet I still get them when I am sick), was diagnosed with lymes disease at 21 years old, developed severe plaque psoriasis at 23 (for which I've been taking methotrexate to control for 2.5 years) and now, for the cherry on the top of this delightful sundae, my body has recently progressed to Alopecia.
Now specifically...my Alopecia story....
So, for the past two years, I have been living and working in rural Japan as an English teacher and was doing well until mid-April this year when a friend of mine came to visit. About two weeks before my friend's arrival, I was messing with my hair and noticed a bald patch about the size of a golf ball on the back of my head, near the nape of my neck. At the time, I didn't think much of it as I had had some all-over hair breakage and thinning the previous year and chalked it up to stress or hormones or a side effect of my Methotrexate treatment.
Yet by the time my friend arrived in Japan the last week of April, I noticed the spot had grown larger as well as noticed more hair in the bathroom sink, in my brushes and on my floor. When I emptied the vacuum cleaner, it was almost all hair and no dust. It was then I started to get worried, but still not enough for me to really consider anything was truly wrong.
By the time June rolled around, my spot had grown continuously and I noticed that more and more hair was falling out, even when I wasn't touching it...what really struck me, was when I studied the fallen hair, it had all fallen from the root. The little root bulb was still attached to the hair strand and the strand in no way looked damaged.
Finally, by late June, I visited a dermatologist in Japan and he diagnosed me with Alopecia Areata, gave me steroid cream, told me there was nothing else he could do and wished me luck. In Japan, all they do is steroid or hair growth (Rogaine) cream. No injections, no shots or medicine. Just cream. Cream and false hope.
So now, its August, my hair hasn't stopped falling out, nor has it slowed in its progress. Everyday I watch my once long, thick, gorgeous hair fall onto the floor, my work desk, my computer and I feel like I am going to explode. My hair loss has multiple spots, but the worst the large spot which is now the size of a grapefruit at the nape of my neck. At the moment, I can still cover it, but I know, if my hair continues to fall and thin at this rate, I will not be able to conceal it by the end of this month.
In a slight panic, I went out and bought a wig from a Japanese wig store, and honestly, its not that bad of a buy...I do look pretty in the wig and it does suit me. Albeit its Japanese styled and at some angles can look pretty fake, but for now, I guess it will do.
Yet the wig can't cover up the stress and worry written on my face...the worry that I will be totally bald, that I will loose all my hair...loose my identity.
I'd worked so hard for so damn long to look the way I did before I came to Japan. To feel confident, self-assured and positive in my body-image and self-esteem, even with my Psoriasis and hives. Now, its all falling away with each strand of hair.I am angry. I am violently upset. Every look in the mirror drags an incredibly depressed sigh out of me as I try to imagine myself bald. Most nights I lie in bed crying, asking myself what I did, why did it have to be me? Why can't I just be pretty and normal like everyone else? Why can't I just be confident for once in my life? Why did my body have to take my skin and my hair? Can't it be happy destroying just one?
Not only will I have bad psoriasis patchy skin, but possibly, a bald head to go with it. How can I be beautiful if I am both hairless and covered in red, dry, scaly patches? Who will ever love me? Who will ever find me attractive?
(Yes, at the moment my psoriasis is clear, but I can't take methotrexate forever and for all I know, methotrexate may be causing the Alopecia....*sighsandshrugs*)
I can't really talk about this in Japan to my Japanese friends, they just don't understand. The only people I have told about my hair loss has been my boyfriend (who is Japanese), my best friend in Japan and my family. My family have been supportive and wonderful as they always are, but again, its just nice to talk to people who really get what you may be going through.
Sorry for being long-winded and if you've read this far, I really appreciate your time and any advice you can give me for how to accept and come to terms with having Alopecia, learning to love yourself and/or see the beauty in yourself.
All of you are so strong and have been inspiring to see in the photos, stories and discussions here.
Thank you,
Megan
Tags:
Ureshii,
I understand a lot of what you are saying about feeling alone, having your self-esteem and identity shaken, panicking about the future and so much difficulty coming to terms with a different appearance than others, as well as your self before all of this. It is so hard to go through because it can feel isolating as others either do not understand or simply cannot help. Although my other auto-immune disease doesn't affect what I look like, I know that it's difficult to deal with one thing on top of another and deal with other people's judgement. In short, I think you have stated a lot of things that others on this site have experienced or are currently experiencing, but I'll tell you one of the most important things--You are not alone!! Remember that, ok?
As far as looking in the mirror and seeing a negative transformation, panicking and spiraling into depression, you are also not alone and aren't going crazy or something. Actually your pattern and feelings are almost identical to what happened with my alopecia. My advice is to take it one day at time and don't go to that place of worry towards the future. Do what you need to do to feel comfortable. Have you ever tried grounding techniques like running your hands under very cold water/holding ice cubes, drinking very cold water, taking off your shoes and standing in dirt, grass or sand? These can help bring you back to the present and snap you out of anxiety. It is hard to manage your emotions, especially the ones directed at yourself. I want to remind you that you didn't do anything to cause this, and it is not your fault. You do have people in your life that love you already, so who would ever love you? Everyone that already does! But no love can compare to the love you have for yourself. Getting to that place is a constant journey but you will adjust and learn over time what works for you. As always, find things you love about yourself--other features, personality traits, intelligence, talents, etc.
About the wigs, I'd say get some that look and feel natural to you, but luckily in Japan, the fashion wigs are fun! I don't know what your personal style is, but maybe you could get some of those. Who cares if some "uniquely cut" wig in a bright color looks totally fake? Models, musicians, actors, etc. wear crazy wigs for different looks all the time. My bet is no one who doesn't know you would guess you're trying to cover up. They would probably think you were accessorizing, maybe even give you compliments.
I hope that at least some of this helps and you can message me anytime if you need anything at all. Best to you!
-pippinsgirl
Thank you for your incredibly kind and thoughtful reply pippinsgirl, I truly and wholly appreciate all your words. You seem like you've been able to come to terms with your alopecia and other auto-immune conditions, I hope to one day be able to do just that as well.
I definitely need to learn how to adjust how I view myself and the world, as the way that I am doing it now doesn't seem to be holding me up very far. I will try to find things that I love about myself beyond just the appearance...its just much easier said than done...which you probably know. *chuckles sadly*
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