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The pain is back...
Hello everyone,
Is anyone ever experienced this: after a few years of feeling "stable" about my alopecian, I was surprised to feel the pain like in the very first years of witnessing my hair falling...
In the last 3 years or so, I did not think that much about my alopecia. I thought I was finally used to it, I thought I went down the path of acceptance. I avoid looking at myself in the mirror anyway, I just felt like it was a waste of energy to keep living with that pain
It's been over 20 years that I have alopecia. It is a scarring alopecia.
But, to my surprise, the pain is back... I don't know how to handle that huge pain I've been feeling again in the last two months... I am having hard time looking at myself in the mirror. I feel so low again :(
Replies to This Discussion
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Permalink Reply by Alo-mom on
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Auto immune can play these games. It is all about inflammation in my mind and that an come and go. My daughter found the Ibuprofen can work well for the discomfort. Go see your dermo, and tell them you are feeling pain, it could be something else going on. Then after that you need to perhaps start looking at yourself in the mirror again and put together a plan to find out what will make you happy again. Is it a better looking hairpiece, one that fits, one with good quality hair, one that is styled the way you use to wear your hair. Or maybe just a new makeup application look would be helpful. You have to get out of this funk and only you can do this with a plan. I would love to give you any advice on wigs or cosmetics you might need. I am just a friend a way. Hope this plan of action gives you come motivation.
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Permalink Reply by Nana on
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Hello Alo-mom,
Sorry for the late reply to your nice email.
I forgot to be more specific about the type of pain I've been experiencing recently... It is an emotional pain.
I am wearing a wig on a daily basis unless I am alone. It is harder during Summer bcz of the heat...
What happens recently is: I was having pain in my upper arm and shoulder and I had some physical therapy sessions. As the physical therapist needs to stretch my neck, it happened a couple of time that he had to touch my head to position my head properly or to be able to stretch my neck and shoulders.
WHen it happened I was so ashamed to be realize that someone found out about my secret, that I am wearing a wig.
Also, one day, I was so afraid my wig will fell off because under the pressure, it started to move. I was so ashamed. I did not say anything, I was in shock. Thanks God, my wig did not come off...After that, I started to feel the pain about being bald... I started to look again at women and see their beautiful hair and envy their beauty
At the end of the day, I look so ugly as a bald woman... I was able to put a wall around that pain for years... But now, I start to feel very unsecured and I am having hard time looking at myself in the mirror...
Thank you for your nice words of comfort and the motivation/
Yes, I need to find a way to be ok with myself no matter what. I am praying to God for strength
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I'm sorry for the way you're feeling. It's very tough, I've been AU since Feb 2017 - I'm not sure it's something that I'll ever get used to. I avoid looking in the mirror at all costs. When I talk to people I look away or look down, having always struggled with self confidence, alopecia made it worse. A few months ago, I decided to have my eyebrows microbladed and I had eyeliner tattooed. It's costly, but it's helped take the sadness away, I still don't look at myself in the mirror, but I hold my head a little higher when I talk to people. It's helping me with acceptance as I continue to struggle with this horrible disease.
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Dear Theresa,
I am sorry to hear that you are having hard time... I hope I was in a brighter season to offer you comfort and strength. But, when I read your post, I realize how deep the pain can be and I just want to help and tell you that it will be fine. At some point, it will be fine.
I believe there are something we can learn from that disease as far as confidence and self-acceptance go. There must be something we can learn from this... Keep looking for that something. I wish you all the best!
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Permalink Reply by JessicaStinkle on
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When I think of my feelings with alopecia, it's similar to being bipolar. Some days I wake up completely fine, I don't care at all and I'm the most confident person that I never knew I could be, other days, I forget that I can be that person and I don't want to leave my bed, I don't want to see sunlight or anything at all. I think it's hard, I spent 21 years of my life blending in. I spent 21 years being who I thought I was, then I lost my hair and this weird hairless person stairs at me in the mirror. Sometimes I forget that I lost my hair but society (and mirrors) always remind us. I don't know If that pain will ever go away, we will always look different and we will always have to give ourselves a pep talk but just don't forget to do it. It's okay to cry, it's okay to be angry or frustrated , and it's okay to have a pity party every now and then. What's not okay is to let yourself become so engulfed in that party that you never move on. You can have bad days but don't forget that tomorrow brings a new opportunity. Push that feeling aside for long enough that it's not an effort anymore, when it comes back, just push it away again. It's all you can do.
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Thank you so much Jessica.
You are so right in the way you talk about this disease. I can now understand why I feel like there are two people in me, the one that go out with a wig and look ok, and the one that really don't look good in private.
My hair lost is not total. I hesitate about shaving all the hair because I need to attach my wig with pins otherwise I feel very unsecured that the wig might fall. I happened once, on a windy day and my wig came off...
When people smile at me outside I always think "would you smile if you really see what I really look that?"
It is such a strange disease....
Thank you for being so honest about the high and the low... It helps a lot to realize that I am not alone experiencing that mood changes...
I really appreciate when you say: "It's okay to cry, it's okay to be angry or frustrated , and it's okay to have a pity party every now and then. What's not okay is to let yourself become so engulfed in that party that you never move on. You can have bad days but don't forget that tomorrow brings a new opportunity."
Thank you so much! Be blessed,
Nathalie
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Emotional pain or physical? I have scarring alopecia as well, and when there's fallout it burns badly enough to keep me from sleeping. As for emotional pain, I understand. I feel like I'm a 'no hair don't care' person, but sometimes something will happen that makes me remember how much easier and carefree life was when I had hair, and it feels like fresh grief.
I wonder, what was it that helped you into acceptance the first time around? Can you get back to that place? Maybe you just need to take time to mourn for a little, and then get back up like JessicaStinkle said. You don't have to be positive 100% of the time to be a strong, courageous, alopecian. That's just inhuman. You have the right to mourn the loss of your hair, get back up, and say you did a good job.
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Hello Finley,
Thank you for your comment.
Is it emotional pain, for me. I did not had any physical pain in years, I was hoping that maybe something was going on, like hair follicle growing back...So I went to see a doctor. She told me that it was normal, but it did not mean at all that the hair will grow...
That was my last visit to the doctor regarding this disease... I believe that is the time when I told myself that it was over. I had to find a way to live with it or I would be depressed for the rest of my life. That was a period in my life were I lost hope about changing things that I could not change.
Thank you for asking these questions :"I wonder, what was it that helped you into acceptance the first time around? Can you get back to that place?"
I don't know why the pain is back... Probably bcz I am having some physical therapy sessions for my shoulder pain and a couple of time, the therapist had to position my head in order to stretch my shoulder, and once my wig almost came off.. I realized that the therapist found out I was wearing a wig, and I was so ashamed...
That is when I started to feel the pain, the anger about having to deal with this disease, the frustration when I look at others ladies and their beautiful hair... It is like all the walls I built around myself fall apart and here I am exposed again...
Thank you for your words full of comfort. I will remember what you said in your post "Maybe you just need to take time to mourn for a little, and then get back up"
Stay blessed,
Nathalie
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Permalink Reply by Christine on
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I have the same issues as you, there are days even weeks where I’m ok with it, well maybe not ok but accepting I wear hair that allows me some security in the world where full heads of hair abound, when I do get down is when there is a reminder, for me it can be a movie,or commercial where I see someone with lovely hair, another trigger is work, I swear the women talk about their hair constantly. It’s normal and a grieving process.
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Hello Christine,
Thank you so much for your post. It helps to know that we are not alone in this, and some emotions that I experienced are also (unfortunately) experienced by another person because of this disease...
The ladies and gentleman that replied to my post used so many words of wisdom and I would like to invite you to read them, if you don't mind. They are full of comfort and wisdom.
The more I think about this disease, the more I believe there must be something I can learn about it, and something that has to be positive for me.
I realize that it will be hard to avoid those triggers as you mention in your post... Maybe think about how you want to react next time that you face that trigger, how would like like to feel next time, what can you tell yourself that can make you feel better and not sink into depression...?
Stay blessed,
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Permalink Reply by TARA49 on
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Sorry to hear that you still get the pain. I get it very occasionally but not too bad - but its odd as there is no hair there!
Could it be diet related?
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Hello Tara49,
You're right, I forgot to mention that it was an emotional pain...
It seems that I have to come to realize that there will be time when the pain will be back not matter what...
I still wish for this miracle pill and discovery that will change so many women's life!
Stay blessed,
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