Alopecia World
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Wanting the obsession to end
Hi,
I have what is likely chronic telogen effluvium (as I have had it for far longer than 6 months now). I really want to stop thinking about my hair/hair loss. I'm tired of it consuming mental energy, of looking at it every single day in the mirror and noticing the areas around my temples where it is especially sparse, of hating showers because that's when the shedding is at its worst, of seeing those notorious hairs with the white bulbs everywhere around the house, and of my ponytail holder falling out because there's not enough hair.
It's hard being in this "in between" position as well - I am not bald, but my hair is definitely falling out and is becoming thinner and thinner as the months go on. It leaves me in the strange position of not really being sure if I want to go out and buy a topper, since the hair loss doesn't really seem extensive enough to warrant it (yet). It seems when one has CTE, it's not taken seriously because sometimes it doesn't look very obvious to others. But I *know* my hair is falling out. Sometimes I even wonder if it's something else other than CTE just because of the sheer length of time the shedding has been going on (gradually over the past few years, but it has gotten much worse this past year). Could I have some other form of alopecia? I have no idea anymore. I will see a dermatologist again in March for a hopefully more definitive diagnosis.
Sorry for the length of this post, but I want to stop this obsession with my hair. Why does hair have to be so important? I am frustrated at a society that puts way too much emphasis on it (especially for women). I don't want to internalize that kind of overvaluing of hair on one's head - I feel guilty/vain for even caring about my hair! I suppose what frustrates me the most is the loss of control.
How do you come to a point psychologically where you can just say "I am NOT my hair loss", "It's irrelevant what others might think of my hair loss", and "This doesn't have to rule my life anymore"?
I want to get to that point - where I can be liberated mentally.
Any advice would be welcome. Thank you so much for reading.
Replies to This Discussion
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Permalink Reply by smpo1021 on
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Hi! I joined just to reply to u as your situation as you describe is the closest I've ever read to mine. I have had chronic hair shedding for 18 mo. I haven't dealt well and seriously checked out of life for the past year. Like I really came close to having a nervous breakdown. I've lost btwn 60 and 70 percent of my hair. Six doctors..repeated bloodwork and a scalp biopsy and no cause!!! What's left is dry and brittle and I have scalp itching and weird sensations. My hair looks absolutely nothing like it used to. I'm trying to turn a corner and plan to purchase a wig. I don't "need" it according to people but I'm sick of looking and feeling like crap about myself. I'm scared to make this change but I can't keep living the way I have been. I can't believe the time and money wasted to come up with nothing. I am here for u if u ever want to talk!
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Permalink Reply by alpine on
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Hi smpo1021! Thank you so much - it's very kind of you to join just so you could reply to my posting! I really appreciate it. I'm really sorry you haven't gotten any answers regarding your chronic hair shedding either...
Hair loss can be so difficult to cope with indeed - I definitely have experienced what you describe, in terms of checking out of life. I'm trying my best to accept things as they are, and to keep going despite my hair falling out.
I think if the wig will help you to feel better, then go for it! I myself am considering a partial wig to make up for the density I've lost, but for now I am trying to simply "let things be".
I am here for you too if you ever want to talk! Thank you again! :)
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So I did buy a wig but have yet to wear it lol. But my 4 year old saw it on the nightstand and told a bunch of ppl today that I bought a wig hahaha. Guess I won't be keeping it low key with this little one. I know u don't want to dwell on your hairloss (understandably so) but if u were ok with it I was just wondering if u could tell me a bit more about your situation. Did u have any tests done...do u use anything or do anything that helps some of the shedding etc. I just haven't found anything that alleviates the shed even a little bit. I get a lot of regrowth but notice that some of that falls out too. It just really bothers me that I did not have an inciting factor. I'm experiencing the description of te but could it be something else? Just very confusinf..hope u r hanging in there!
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Hope you're hanging in there too! I was just diagnosed today with TE and early-stage AGA. I started minoxodil in late March and will be continuing with it. I am also getting tested for celiac disease (I have chronically low ferritin) and PCOS (getting my hormone levels checked out).
My regrowth also falls out too - the new dermatologist I saw (who is excellent) thinks that in my case minoxidil is working, but the regrowth falls out due to low ferritin and stress related to other conditions I have (depression, migraine).
I would encourage you to seek a second or third or even fourth opinion from dermatologists! I had to see 3 before getting properly diagnosed (no one caught the early stage genetic hair loss I have, until I saw this expert dermatologist I am now seeing).
Good luck with the wig-wearing - hope it works well for you and helps you feel better and is comfortable :)
I was more than happy to tell you a bit more about my situation - if it's helpful in any way, I will be very glad. Please feel free to keep in touch :) Take care!
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Permalink Reply by Tallgirl on
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When I knew I couldn't make do anymore with my own hair at high school, I got a "fall" (half wig) and pulled my own hair over it, secured with a clip in back. When THAT didn't cover the increasing hair loss, I got a full wig. Then I felt free enough to join all kinds of clubs (art, culture, drama, more), travel, dance, etc. So...my solutions? If you hate the mirror, stop looking in it. Hate your own hair? Cover it. Get on with SOOOOO many events, shows, trips, parties, studies etc. that you have no time to ruminate and obsess. Your new obsession just may become your interesting LIFE!
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That's good advice, Tallgirl. I am going to try to distract myself with different activities as well so that my new "obsession" becomes living life rather than worrying about hair. I just got a proper diagnosis today and I'm continuing with minoxidil, so we'll see how things go. Thanks for your reply and best wishes - Take care! :)
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Permalink Reply by Feedingsparrows on
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I'm so sorry you are going through this! I'm 27 and have been shedding badly for about a year. I'm certainly no expert on acceptance (in fact, it was research on that topic that brought me back to this site today), but I will say that being able to get more sleep at night, more real rest, has helped me. I am still very sad about my hair, especially after receiving the AGA and CTE diagnosis, but I have felt so much better since I found something to help me to sleep deeply again. Now, in the mornings, I don't wake up at 5:00 with dread as I remember the reality of my hairloss. The waking-up is more gradual and natural. I am able to think more deeply and more creatively again with that extra-dose of rest.
Anyway, it may sound too mundane to really be a help, but it does contribute to the quelling of panic! Very best wishes to you.
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Thank you so much, Feedingsparrows (I love your name, by the way). I was just diagnosed (today in fact) with both TE and early-stage AGA.
I'm so sorry you're also going through this, and you have my deepest empathy and best wishes also! Please feel free to keep in touch with me :)
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I can totally relate. It gets so exhausting and I get so angry. I'm in the early stages of hair loss so I'm still going through all of the grief. It's hard. I don't know what to do really. I'm just glad I'm not alone in this. I am scared too though because this has put me in such a deep deep depression.:/
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Indeed - I can relate to your comment as well. Sorry that you're in a deep depression - that is very difficult to go through. I really hope things improve for you and if you want to talk more please feel free to send me a message at any time. Take care.
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Permalink Reply by Pam D. on
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Something I have learned from coming here is everyone takes this different. I have never felt sorry for myself; the one time I was actually depressed about was the third time I found my hair falling out (it has come back twice before) and I was ashamed for feeling that way (I have 3 friends dealing w/cancer, all for the second time and 1 is terminal). This time is the worst as I have lost all of it & I'm not sure it will come back again. I have never hidden the condition from my friends (I "came out" on FB) and I will go out in public with a hat or scarf knowing I look bald. There never was a "how" or "when" for me; I accepted the condition the first time it fell out, then it started coming back...so yay! I have a sense of humor about it...when I'm told I have such a pretty face, I come back with "it sure would suck to be bald AND ugly, wouldn't it? or when I get a complement on my wig (they think it's my hair) I say "thank you, it's a Raquel Welch wig....sure do wish I could have bought her face, too!". I am open about how I look because I might look different the next time they see me...sometimes I wear a wig, or not, I could be lacking eyelashes or eyebrows because I'm too lazy to glue them on (so I draw them on). Sometimes I might want to confuse people just to see what they say, so I might change my look knowing I wore a dark wig and eyebrows the last time I saw someone to a lighter wig and blond eyebrows. Admittedly I do think about my lack of hair more than I'd like, but a wig or a hat is a subtle, daily, reminder. of what is and what was....this is my new "normal" and it is best to just accept it or go crazy. My friends are supportive, my family still loves me, and I can continue to do the things I love...what could be better than that?
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Pam, what a great message. I hope to develop that attitude some day.
Am I allowed to mention products by name on this site? I'm going to try it. Alpine, have you heard of Nisim shampoo? It might help the shedding a little, though it's not a magic product and I wouldn't get carried away by the hype on their site. The regrowth gel did nothing for me. The shampoo does seem to help the shedding a little. Just a thought.
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