Comment by Miss Texas on April 1, 2013 at 10:55pm

I know it doesn't seem like it now, but it will get better. Remember that you are not just the hair on your head. I know this pain. I have never met you but please know you will be into thoughts and prayers tonight.

Comment by Sarah on April 1, 2013 at 11:27pm

I don't know who you are but I just prayed for you and I hope you are receiving god 's grace. You are not alone....stay strong and positive.

Comment by Tallgirl on April 1, 2013 at 11:48pm

I have found that people really only care about themselves and how you can listen to THEM...so, if you are expecting constant attention, soothing, listening, etc. from non-alopecians...or even alopecians...then you are forgetting that it takes two to listen. Sometimes, silence is best, too. Journals, dermatologists, www.naaf.org, support groups and re-channeled energies help keep us from overwhelming our friends (or turning them off).

Why not SHOCK everyone by doing something 180 degrees different than they would expect from you? I mean like taking on a TOTALLY different class or hobby, traveling or moving to an unexpected town, switching colleges, revamping your wig color/shaving, doing a wardrobe makeover, totally redecorating your room or apartment, etc.? You will distract them (and yourself) and supply a different topic of conversation to attract them again. Besides...you may find that you learn about and like new aspects of yourself. You are more than alopecia, you know!

Comment by Debs on April 4, 2013 at 10:37am

I hope you are feeling a bit brighter, Tallgirl has given you very sensible advice, I would start to make some changes in life like she says and people will want to be around you again. Lots of good wishes from everyone on here.

Comment by michelle on April 5, 2013 at 4:48pm

Hi there,

I do appreciate that you are having a difficult time. By no means am I minimizing your suffering. Unless you have been through the experience of losing your hair(and in my case my whole body) you don't know how it feels.

I am a clinical social worker so I do come from a place of experience. I worry when I see your post. You have an expectation from this forum that I'm not sure can be met. I do think that individuals are here to support each other. I'm not sure its reasonable to expect ongoing posting. Tallgirl gave some great advice. I would strongly suggest that you get in touch with your family doctor. You might benefit from some individual therapeutic support.

Comment by suffering on April 5, 2013 at 5:50pm

I thank everyone who has taken the time to comment on my post, but I do feel upset Michelle, reading your comment today. I do not know what you mean when you say that I have expectations that you feel cannot be met on this site. I don't know what you feel my expectations are. I am suffering more than words can ever say, and am reaching out to people in this time of crisis for me. Tallgirls comment while I know is meant to try to help, overwhelms me. I am not in a position to try any of her suggestions. I am 54 yrs old, and not well enough to travel, something I have always so loved to do, or enroll in college courses, etc. There are no support groups where I live to help me with what I am going through. Writing annonymously on this site or any others I might find is all I have, but I now feel rejected from even writing on here to reach out to people. I feel so hurt.

Comment by michelle on April 5, 2013 at 8:56pm

Hi,

I'm sorry you are feeling hurt. That was not the intent of my comment. I do wish you well on this journey.

Comment by LaNae on April 7, 2013 at 3:17am

I sense you have some great computer skills, love to communicate, and have precious time. How about volunteering on line? On some of my down days, I add image search words at vineyard.lds.org It is a simple, fun activity that gets the mind thinking of obvious and not so obvious ways a picture might relate to topics. There are lots of other online volunteer options. Some are people learning English as a second language who just need someone to give time to communicate with them. Do an Internet search and you are sure to find something interesting to you. In giving to others, your pains will not be so overwhelming.

Comment by MeganG on April 7, 2013 at 3:29pm

I truly hope you are feeling better. I am sorry you are hurting and feeling alone. You aren't alone, and I am willing to listen to you. I am new to this site but not new to alopecia. If you'd like to chat, please let me know. In the meantime, I will be praying for you and sending you happy thoughts.

Comment by Tallgirl on April 7, 2013 at 10:47pm

www.naaf.org has a link to phone support contacts in all parts of the USA. Many colleges have online classes. YouTube has how-to videos and travelogues. Libraries and bookstores have meetings and discussions. Cancer groups may have advice about good wig stores in your area. Online searches can find great hats, scarves and wigs. There are online social groups for gardeners and people interested in genealogy or any other subject. Local parks-and-rec, cultural groups/festivals, cooking or spiritual groups have adult activities and meet-ups. I am 60, underemployed, have alopecia totalis, but seek out fun things and low-cost options all the time. You could, too!

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