Alopecia World
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The very real truth about my condition
I have alopecia areata. I also have rapidly progressing vitiligo. I have bald spots on the side and back of my head right now with a spot in the front that has almost filled in and diffuse hairloss as well. 20% of my body has lost pigment and is covered in white splotches. My newest spot takes up most of the back of my right thigh. It appeared overnight and I found it Friday. Both alopecia and vitiligo came on around the same time and are both fairly new to me. Baptism by fire.
It's one of those days. I feel on the verge of tears, but I can't cry. I want to cry. I want to somehow release the pain in my chest..in my throat.
Life has been so painful lately. I try to hold my head up and maintain my dignity. We can be dignified and sad at the same time, right?
I have such a positive outlook. I know alopecia has been a gift. I know I am valuable and have innate worth that doesn't change with my appearance. I know I am doing EVERYTHING I can to cope and maintain strong support systems in my life. I help others who are trying to cope. I tell them it gets better...hang in there...
...And then there are days like today. When I break down and feel like giving up. It gets hard to see how things will get better and I can't take a break from life. I need to work. I need to pay bills. I need to take finals. I need to be there for my partner.
But I really want a break. I really want everything to just pause for me...just for awhile. Instead I hear that my father is in great pain and not sleeping through the night and we don't know how long he will last. No break in sight.
It is only pain. I can do this. Just one more day...just one more breath. I can do this...right?
This is my plea for you to be more honest than you have ever been. I see myself as a leader, a visionary, and a force of love on the planet...but this is some real s**t that no amount of positivity will change. I don't even know if that would be heathy. I know I can't be alone, but it takes my breath away to say that because, god, I feel so alone. Please. Let me know if you still have days like this too.
Replies to This Discussion
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Permalink Reply by Ktownnana on
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Gia, I think we all have days like this. My Dad suffers from Alzheimer's and when I visit him, it is heartbreaking. He does still recognize me, but does not remember my children or grandchildren. I know there will be a day when I visit that he won't know me either and this breaks my heart. I guess this is my biggest fear right now. I know your heart breaks for your Dad too. My sister and I both agree that we should just take it one day at a time. Sometimes I feel so bummed because I don't have hair, but yet I am blessed because my hair loss could be a result of chemo or radiation. I was married a month ago today and God blessed me with the sweetest husband who says my lack of hair doesn't bother him one bit. Again, I am blessed. I was diagnosed with spinal stenosis in October of last year and I am in a lot of pain most of the time. I try to keep active (that's what the dr. tells me to do), but some days that is so hard when the pain is so intense. My faith in God keeps me going and I am reminded of the scripture that if he takes care of the lillies and the birds, then he will surely take care of me. Please know you are not alone in this.
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