My mind has been on alopecia and what is the best way for us to live life to the fullest while living with the condition?
I am convinced that this is more an emotional battle than a physical one.
Our struggles seem to have more to do with acceptance, will I find a mate? Will kids at school laugh at me? How do I tell my new date? Will my spouse still be attracted to me?
My thought is, if it was just physical then “slapping on” a new wig would be all we would need to do to get back to “normal” but we find that we get the new hairpiece and the fears and anxiety remain.
Am I wrong? Do you see something else? What is your best advice for handling emotional aspects of alopecia?
I agree with you. I wish that putting on the wig fixed everything. Right now I hate everything about alopecia. The wigs, the hats. All of it. I would just like to look like myself again. To get up every day and just brush my hair and go. The expense of wigs and hats is crazy. I do it because I’m definitely not brave enough to walk around out in the world without my hair. It seems to go in phases. I just accept it and do it and then I hit a phase where I just can’t accept it anymore. Anyone else feel this up and down emotional roller coaster?
Living with alopecia is more than emotional and physical though we could possibly tuck various experiences under each of these two umbrella words. Each person who has it is at a different stage of their lives so the impacts vary widely. Throw in things like male or female, affluent or poor, etc. and it becomes clearer that the optimization of living with the disorder is multi factorial. I do, however, believe the ability to cope is uniquely different when the affliction happens at an early age. It would simply take too long to describe what happens but suffice to say they would not experience anything close to a normal childhood and as a result their entire lives are changed mostly in undesirable ways.
Living with any long term condition has the emotional elements.Every day you have you have to self talk.Either the condition beats you or you beat it.Only you can choose!
I have had Alopecia Totalis since I was 6 years old I am now 47. My childhood was strained but the friendships I made were genuine so that helped me through a difficult part of life.
AU @ age 7 to now @ 60
While I turned into a very successful person - USMC combat veteran, wife and 3 adult kids, BS and MS in engineering, and 25 years in the civilian workforce. Now retired and financially set.
I could have found myself in prison or dead at an early age because of the very real scars that were burned into my soul by society.
ps: please don't anyone talk crap to me like 'mind over matter'. That's just a BS cop out that makes you feel better.
Dave I agree! My 17 year old son has AU which progressed from AA age 9 to AU at 13, smack in the middle of 7th grade. He’s handled it quite well, but it changed him. He wears a beanie all the time except when sleeping. My happy boy who loved hanging out with friends (boys and girls) no longer wanted to do social activities, especially not with girls. He has not gone swimming since his diagnosis and we live near lakes, rivers, and pools. He focuses on mountain biking and teaching himself piano, and has managed to keep his grades up. I am so proud of him for focusing his energy into good things, but he definitely has not experienced a typical teenage life.
Wow! Dave W. you hit the nail on the head for me. I've had AA since my early teens and high school was so torturous for me that I am still emotionally scarred. I am in my mid 60's now and still suffer emotionally. I resorted to wigs early but as Ally commented, it is still an emotional roller coaster such as changing my hair style and having people ask if it's s wig. I've always wanted to learn how to swim, play sports, etc but knew I couldn't deal with the stigma of a mishap. Self talk hasn't worked for me!
TH yes a form of torture only it never ends. We just become numb to our feelings as a coping mechanism.
Alopecia stole my son's heart and soul. He is 16 now and has had AU since the month before his 11th birthday. His mental health has declined so badly that I literally just started a GoFundMe to raise funds to get him into residential treatment. His full story is on the GoFundMe page at the link below. I encourage anyone who questions the validity of the emotional pain to read the story of our experience that I've written on that page. The psychological trauma is definitely real. Very, very real.
This is what the psychological trauma of alopecia looks like
It hurts so much to know that your son is going thru what I did. If there is anything I can do to help let me know. He needs to be able to envision a happy life filled with love and to know that he matters. A tall task given the circumstances.