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Has anyone "hid" what's left?
For 20 years now I have had hairloss. My hair would shed so bad at times it would fill up the sink! For some OCD reason I have saved it in baggies over the years and it could fill up a bathtub..BUT...my family NEVER believed me because you simply couldn't tell. I had so much hair that I always maintained what looked like a normal head of hair. I was diagnosed with several autoimmune diseases while it was all going on: hypothyroidism, ankylosing spondylitis, psoriatic arthritis, fibro...about 14 months ago it started getting worse while I was using biological drugs. I think since my joints, bones, and skin were attacking my body it got confused and the hair jumped on the bandwagon. OK, this is going to sound like the craziest thing you have ever heard...because 5 biopsies ruled out alopecia areata my family refused to believe it and kept telling me, "if you would stop worrying about it it would stop falling out!" So all this time I have had to deal with that, feeling pressure from them that some how I could stop this. You know because afterall about 200 drs couldn't be wrong? RIght?.....So the last 14 months my hair has literally been coming out in clumps. Saturday eve. I discovered a spot in the front that I had never seen. It is a scar from a biopsy that looks like a bald spot but the point is so much hair is going that there's nothing to cover it up with anymore. Here's where it sounds even crazier. I went into such a tizzy over that spot that I have had my hair in towel since then and every time I take it off I start crying. I am chronically ill, my little girl is home from school sick, and then this...I feel like I am going to explode. I just want it over with and can't face it..I feel like when I take that towel off and wash my hair-that's it....I feel like I've let my family down because they didn't think this would happen. I know that is insane! I just don't know how to deal with it all. I keep trying...failing...trying...failing...I am trying to find a therapist to go to but I am scared because I don't even want to leave the house. Can you say basket case?
Replies to This Discussion
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Permalink Reply by Karen Smith on
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We are here to listen and I am sorry you are going through this. The hairloss is a real loss and it is ok to mourn it but then you have to get up and get on with life. You can only allow yourself to stay down so long. Please get counseling if you can. Hairloss does not have to be the end of your happy life unless you let it immobilize you. There are good days and bad and it will get better.
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Permalink Reply by Chefpam on
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Thank you all for caring. I am just so tired....I know you are tired too...tired of hearing me, LOL...I have the flu today and just got out of bed, yay me, what else Lord? Yeah, my plate is way full. Just so you know we are searching for a therapist. Meanwhile, I am being scheduled for a pet scan to rule out any cancer since my body just keeps failing. Alice-I have said the same exact thing to them-as much as I want hair and if I thought not worrying for one minute would stop it-duh, yeah, I would definitely drug myself into the non worrying state. I guess they don't know what to do or say anymore. I really do feel beautiful on the inside but all this illness makes me see a different reflection in the mirror...I am tired from all this. Trust me, I constantly ask God for strength...all day every day. I just ask Him to let this change whatever way and set my feet on solid ground. Thanks again for supporting someone who can't seem to get unstuck...
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Permalink Reply by Tuesday on
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I mention God because you've mentioned your religious leanings a bit. I hope you don't mind. I was reading a religious book the other night and the author commented "life is hard ... there are no free rides". That passage stuck with me. I guess that is the reality - there are no free rides. And not everyone is forced to bear the same things. That said, a good therapist might help you cope and get mobilized. A lot of people find counsellors can help redirect and retrain thinking and coping skills so a person can back to enjoying life.
I find when other things are stressing me out (my chronic pain, my worries about my children, marriage strife, financial issues, etc.), my alopecia issues bother me more.
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So true Tuesday...it's okay though that I have burdens...just wish they weren't so intense that I could fight one at a time...I can't focus...just want my feet on solid ground whatever that is..I don't remember normalcy anymore. I need some normal thoughts back...I am just overwhelmed. We have not been able to find a therapist yet...sad that I can't find one that speaks English here in Ky....
Thanks Heather, WOW...that sounds a lot like me and I have had a hormone imbalance since I had Tess 7 years ago...no matter what they give me, change, etc...I am no better. Right now it's time for my monthly visitor and I am hot flashing, sweating, breast tenderness, plus my regular pain, the hair thing...yeah, I can't think straight no matter how hard I try. Maybe one day this will all break-that is all I know to focus on to get me through it. I can't imagine going on leaving like this, it is awful. Thank you for loving me and accepting it...it's so hard to try to talk to my family and friends....You guys are great and I am so luck to have you in my lives...seriously mean that.
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Permalink Reply by Heather on
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Hi Chefpam, I don't think you are a basket case. Most of the people here feel or felt as you do, but instead of a towel, they wear a hat or wig. I understand how you feel, mine was a different situation, but I imagine it is similar enough. I also was ill for a long time, except no one could or wanted to figure out what was wrong. When the whole hair thing started happening, my body just fell apart---burning skin on my whole body, vomiting, severe leg jerking, headaches, dizziness, depression. I couldn't think straight. Oh, on top of it a hormonal imbalance...I don't know if all that was from the hormones or not. I was definitely not myself, I cried all the time. I felt like a prisoner in my own head. No one knew what was going on with me, I think they thought I was just being dramatic or something, which was very frustrating. The thing is is that people don't understand what you are going through because it's not happening to them. Try to give yourself a break, stop beating yourself up, you have a lot on your plate and you're trying your best to sort through it. Right now, you feel the way you feel...feelings aren't wrong.
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