Alopecia World
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Feeling overwhelmed and angry about my diagnosis and I don't know what to do (my story)
I was diagnosed with alopecia areata about two months ago. I noticed a spot about the size of a golfball near the temple of my head and ignored it for a month. Then I noticed that the golfball sized spot had stretched all the way around the side of my head and behind my ear in addition to three more spots, including a receding hairline in the back. From that day on I have never worn my hair in a ponytail. That week I saw three different doctors who confirmed my diagnosis. The dermatologist started me on the topical steroid.
My parents didn't know how to respond and they still don't. My dad tried to be supported, but I could see underneath his strength that he was thinking that I would never be able to find a relationship now and that his pretty precious daughter that he had done everything for was now defective. My mother is a very superficial and jealous woman and often makes comments about how tv actresses are so ugly and whats wrong with their faces or bodies. She hates the subject of my alopecia and so does my dad, although he pretends not to. I stopped bringing it up with them because it just seems to cause stress for them and they never have anything helpful to say.
I never told any friends because I worry that they will be happy or relieved that my life is not as perfect as they thought it was and that I too have struggles. I am an only child and my parents give me a lot of stuff, such as paying for college, and they treat me really well while my friends have difficult home lives and money issues.
For a while I pretended that it didn't bother me that much, and if I went bald (which becomes more real of a possibility every day and I watch hair after hair fall out) I would deal with it then and use this condition to make me a stronger person and use it to my advantage if I could. I realize now that I was in denial and trying to appear strong for everyone else.
Inside I feel so angry and scared about my future and what it will mean for my life. I finally got things on track with school and started applying myself and doing better. And I met a great guy that really seems to like me. He is deployed right now and says he wants a relationship when he gets back. But I don't think he will still want me if he knows of my condition. Or I may lose so much hair by the time he comes back that I will be bald. I am praying desperately for my hair to fill in the huge bald patches on my head and for this condition to not get any worse. My life finally starts to be going good and this condition sprouts its ugly head where its not wanted. I feel angry that it chose me and that unlike other things in life, there is little I can do besides sit around helplessly and watch my hairs fall out one by one, feeling lonlier and more detached from everyone all the time.
No one understands what I am going through, even if they pretend they do. My dad just says well at least its not cancer, and although he is right, it just makes me feel worse for feeling sad about this disease. Who am I to feel sad about something as insignificant as hair loss when people are dying. I've been pushing my friends away and being angry and mean and I don't know how to stop. When my roommate complains that her hair is too thick and she has too much hair I want to strangle her because I would give anything to have that problem. My life feels more out of control every day and I don't know how to turn it around.
Replies to This Discussion
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Permalink Reply by Epo on
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Hey - I'm in the same boat as you, almost exactly. I posted something similar to this about a week ago. I really wish I had a cure for you, me and everyone else in regards to the alopecia.
What I found helpful for my emotional state was to see a therapist. I've been seeing one for depression issues, but realized she would be a great resource while struggling with the alopecia. She gives me the push I need for the week to be less loner-y and antisocial, even though most of the time, all I want to do is cry alone.
My family and friends have been really supportive, so that is a plus, but they don't know what to say. I've come to terms with that - what can they say to me that would make me feel better? Nothing, really. So they are just there for me, and know full well that me being antisocial isn't a reflection on them. Since they know that, I don't feel like I am losing my friends - they just know that I am going through something, and will need to keep to myself at times. If you feel like you can't tell your friends because they will gloat on the inside (I get that, I have friends like that too, so I didn't tell them, but I did tell my very best friends about my alopecia), then I recommend even more that you should see a therapist for some support.
I think it's okay to be angry and mean, though obviously, if it is impacting your life, you should maybe seek out a therapist or write more on this forum. I know I have been really resentful, upset, mean, angry after being diagnosed with alopecia areata in a few months ago. At the rate my hair loss is going, I totally am scared I will lose it all, since I have huge patches all over my scalp. I feel like what our family and friends don't realize is that we are mourning the loss of self - yes, we aren't dying, and to "just" lose hair shouldn't be so horrifying, but hair is part of our identity especially as women. We grew up thinking hair and femininity go hand in hand, and so losing our hair like this is seriously insane and not fair. People who haven't gone through this wouldn't ever need to understand how that feels, and since we aren't at acceptance yet, we feel so alone and angry. Just don't let the anger ruin your life - use it to force yourself to do better at something! Use it to work out, do better in school, research, or anything. I use my anger as "energy" so when I am angry and sad about my alopecia (which is most hours I am awake since I am new to this diagnosis), I do yoga, work out, and read books. I use the anger to do tasks that calm be down.
A lot of the people on this forum have accepted their hair loss, and hopefully one day we will (or maybe our hair will grow back by then, or both!), but until we accept our hair loss or it grows back, just remember you aren't alone.
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I hear exactly what you are saying and couldn't have expressed the feelings better myself. You basically said everything that I feel too.
It is a horrible disease that really tests you as a person. I have been struggling with this on and off for a few years but lately it has only been getting worse. almost half of my hair has receded up the back of my head, large missing hole on the side of my head by my temple, which has now connected to my forehead, some spots on the other side of my head, spots on the back of my head now and receding above my ears. I am sick of feeling helpless and just sitting back and watching it get worse while the doctors pick their noses and tell me to get lab work after lab work.
They discovered that my iron is low but no one can really say that its the main cause of the alopecia or not. I started taking supplements myself because no one would tell me what to do. Now I am being told to have my levels rechecked to confirm the low iron....sure now after I have been supplementing it!
Un real.
Anyway....you may feel like you are just sitting back doing nothing as these spots spread over our heads and take over our lives, but there are some treatments that at least temporarily help. i received the scalp injections twice now, once a few years ago with my first single spot,...and a few months ago for the several spots and hair line on the back of my head. will be going again next week for a recheck...while not much has grown in (look like a 5 o'clock shadow) I am hoping they see how serious this is and do more injections and maybe more answers.
I have tried the steroid foam, injections, rogaine, emu oil and coconut oil and still hardly any hair growth. Now I feel like I am doing too much and its being counterproductive.But who the hell knows. I wish your family was more supportive. My parents try to be, but my mom does the same stuff, comments about how the hair dresser always cuts one side too short and she complains to me about it. I just tell her "at least you have hair." I only told one friend about the condition, she suffers from immune related diseases too so at least we can share our sob stories.
But this place is a good start for you, there are many of you here that you can talk to and vent to. sometimes I feel thats all I can do is just scream or be angry and go crazy.
Try using exercise or running as an escape for it. It works for me at least for a short while.Have you talked to your doctor about more treatment ideas or looked for homeopathic remedies at all? I am still researching myself. but tired of doing all the leg work while my doctors do nothing. :-(
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I feel like my doctors are awesome, but the consensus is that.. they have no clue AT ALL what causes alopecia, and since they don't know what causes it, they don't know how to effectively treat it!
So far, I've also gotten the cortisone injections every few weeks, and am almost done with a one month course of Prednisone. The prednisone hasn't done anything to my hair loss, in my opinion, but I definitely have all the negative side effects so... I guess it is doing something, just not what I want! My dermatologist is awesome, but also a straight shooter, and said that my alopecia is not unique. I'm not special. And that is a GOOD thing because that means it is not unusual. It is horrible, but it's not unusual! So I try to take solace in that. I mentioned anthralin, the DPCP immunotherapy treatment, and some other things I found on the internet, but she said that we should let the injections take some time to work, since there has been some regrowth (though not much).
I also see a hair specialist at the Philip Kingsley Clinic in NYC, who is incredible and amazing. She is like another therapist to me, since she is so patient. She is also honest, and a straight shooter. She said that if she didn't think she could help me, she would tell me, because she is in the business of results. She won't take a case if she doesn't think she can do anything for that person. At the moment, she also thinks that I need to let the alopecia run its course, and I should continue with the injections, and no other medical treatment. She actually advised against the prednisone, saying it almost never works but instead sets the normalcy of your body back, but I took it anyway because when desperation hits, I try anything! She has me on a daily treatment of shampoo, conditioner, tonic, and amino acid vitamins, with a hair stimulating mask/hair elasticizer every 5-7 days. Not saying I see any improvements, but I feel better knowing that I am at least being proactive. And I trust her, so I figure I have nothing to lose, since my scalp DOES feel better, even if there is no growth.
Have you gotten a second opinion, or gotten more tests done? I've seen two dermatologists, and two primary care doctors, on top of an endocrinologist, my ob/gyn, a neurologist and an immunologist, done ALL their tests including MRI's and other scans, and the consensus is : I am healthy/...I just have alopecia areata. :( And that it will most likely get better, even just on its own... I just need to be PATIENT! But being patient is way easier said than done!
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Hi Rachel,
I am so sorry for your loss. I know how helpless it is. I was diagnosed at age 26 although I had had it since about 7th grade. Steroid injections into the spots help regrow the patch if they are done soon after the fallout. When I stopped birth control pills the spots got worse and then when I restarted the pill they got better. Just mentioning it for you to think about whether or not you stopped the pill since your boyfriend is out of town. This is a disease that changes your life. There is no way around it. Our society is shallow and glued to the airbrushed, surgically modified look. There is no way to change that. All people grieve the loss of their appearance as they age. This disease forces us to go through that process at a much younger age. It is incredibly painful, especially for a young woman, who may feel that her worth is tied to her appearance only. Real friends will stay. Real men with integrity stay. But nobody wants this, not you or your boyfriend. But you find ways to work around it. This disease forces you to develop your inner beauty and personality. It is a painful process. The pain gets better with age, but that takes time. You need to give yourself all the time you need. Fortunately it sounds like your family can afford a real human hair wig if it comes to that. A cosmetic disease can be extremely emotionally upsetting. When people compare Alopecia to cancer it only minimizes your pain and helps them feel smug. It is not helpful. I hope your bout with AA is short lived and that someday you will have a full head of hair and this will be a distant awful memory.
Christy
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Christy its funny you mention the birth control because thats when my first patch of hair came out was about 6 months after I stopped birth control!
I swore to my derm that it was hormone related but she told me it wasn't. But the time line fits too perfectly to rule out hormones.
I went off birth control to try and get pregnant...it was a February/March...my first hair patch came out in the following October. And since it usually takes a while for the BC to be flushed completely from your body, the timeline fit.Got the injections and it started growing back. I got pregnant that November but we miscarried at Christmas. I then got pregnant again in February. Had no issues with hair loss through the entire pregnancy, the spot grew back in great and there was no sign of the disease.
I gave birth in October 2011....about 3-4 months after I noticed some hair growth by my forehead, at the hair line as if it had thinned out and started growing back which I was told was normal for nursing mothers. However I started noticing the hairline in the back of my head had receded. It all the way across the back of my head, not a spot or anything, but the entire hair line. My husband thought I was crazy and said it looked normal but I knew better. Over the next few months it kept getting worse. I had to deal with it because I couldn't get any of the treatments while I was nursing. when my son turned 16 months I went to my derm and they gave me the foam again but said I couldn't get the injections until I was done nursing.
So I weaned him and a month later started the injections again. A week later another spot showed up on the side of my head, weeks after that another spot on the other side, and two more on the back of my head...so she can't tell me hormones play NO role because
it makes more sense that they do, based on my timeline.We want to try and get pregnant again at the end of the year so I am hoping that if we do conceive that my hair will start growing back bc of the pregnancy. Maybe Ill just need to be pregnant all the time, lol
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I too began to have bald spots show up during the course of receiving the birth control shot 'depo-provera' following the birth of my son. It was just around the time I was due to get my second shot (each lasting six months) that I had a spot on the back of my head fall out, about the size of a quarter. Needless to say, I didn't get the second shot. I had also been very low on iron during my pregnancy, taking very strong iron pills during the last trimester. I have always been anemic. Following that time, I struggled with a spot here, and a spot there, for several years. I saw a few doctors that specialized in hair loss, and remember one visit I traveled hours for, where a doctor sat me down with a text book he had in his office, showing pictures of women with alopecia. At the time I only had 'the' spot, and the pictures he had me review where of women who, at best... had 'a' spot of hair. Like a ponytail placed randomly on their head, or maybe two ponytails. I thought to myself when I left his office, that if I was a weak, or emotional person, that could have been enough to push me over the edge. What I didn't think was, that would be exactly what I would look like at 47 years old. Except, I don't even have the random ponytail. I don't know if the depo-provera was directly related to my alopecia, or if childbirth was a cause either, I just know that I have it. And I am completely bald, with random eyelashes, and just lost my eyebrows about 4 days ago. I was known for...and recognized all of my 'younger' years, for having a beautiful head of long dark hair. I was able to conceal the hair loss in my thirties, and wore a baseball cap with a ponytail (that eventually was the size of a pencil) for the first few years of my forties, before buzzing my head (all 50 hairs, lol) and now I wear wigs. It's okay, and you can have fun with hairstyles and make due just fine. But, if I could be granted a wish, if only for a day, I would just like to recognize the face I see when I look in a mirror. I just want to 'feel' like myself again. I miss that 'bedhead' I used to complain about, or thought I needed to fix before leaving the house. I would love to feel the breeze blow through my hair, and cool my scalp on a hot summer day, and feel my hair brush across my shoulders when I move. Most of all, I would love to be natural. By the time I get the brows drawn, the eyelashes on, and the wig secure, and not to mention the normal things us women deal with at 47...'gravity' the better supportive bras, and/or the spanx on occasion, by the time I get to where I feel like I'm the best I can be, I don't recognize myself. I just want to be me. I just want to be plain ole me.
Sorry- guess I'm feeling a bit nostalgic today. To end on a more positive note: during the course of all of this, I have regrown my hair a couple of times. Everyone has a different story, not all of us end up bald. Please don't let yourself get discouraged. I honestly do feel like our attitudes do play a role in all of this. Mental health and emotional health are huge factors in how we deal with this issue. Stress....not good. It is what it is, we are all beautiful, at least we aren't sick. Thank the lord!
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Thank you all for your replies. I have been actively seeking treatment, and while it has been working somewhat, it isn't working as much as I would like. I have done the steroid cream which gave no benefit at all and have had the steroid injections twice. The injections have helped and while I see lots of tiny hairs in one spot, and some in the other stops, it is nowhere close to full regrowth. I am happy to have any regrowth at all though, because now when my hair is not covering the spots it is not as noticeable. I did anything I could to stop the hair loss. I had been a vegetarian for a year before I noticed the spots, and I quit the diet almost immediately after my diagnosis. My entire blood panel came back normal, including my iron and protein levels, but I know that protein deficiency can cause or contribute to hair loss, so I started eating meat again just in case it would help.
I have told some family members and friends that I quit my diet because of a protein deficiency even thought that is not true. I have also wondered if there could be a hormonal cause, but I have been on the same birth control pill for a year and a half or more. And I am trying to be more positive about this, but its hard. And I find myself constantly wondering what the world would be like if everyone knew about my alopecia. How would people treat me differently, who would treat me the same, and who would stop talking to me altogether. I have a lot of men that hit on me, but I always feel like a fraud because I'm sure they would go running if they found out. I'm glad I found you guys though, because you at least understand what I'm going through and how to give me words of encouragement.
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Permalink Reply by ASRN on
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No it's not cancer but it can still suck sometimes. Early on in my loss I used that as an excuse to not grieve my hair loss. I had the same guilt for being sad about losing my hair. I still think it sucks BUT I do not let it consume me. The depression would strangle me if I did. At times I thought it might even though this "superficial" thing was the only black spot on my pretty great life. Mostly you have to act confident - even if its just an act for awhile - and eventually you find that you are more comfortable and confident .... Then it sucks less :-)
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