b a r e

writing is healing. ask me anything.

Tag: alopecia areata

What is your birth position in your family? Does it impact your mental health? Why?

So, as the story goes, when my little sister was born I tried to climb into her crib to kill her. I was one month shy of 2 years old. Of course I have no memory of this. But it was enthusiastically rolled out at social events by my mom. I can always count on her for embarrassing stories. Is that who we become when we get old? Just a collection of stories?

I was always faster and stronger and smarter growing up. I felt good about that. But it wouldn’t be a competition if there wasn’t more than one person. And competition definitely took place. Scholastic success was always easy for me. I don’t remember if she struggled. I was articulate and enunciated perfectly, she smeared her words. I was always taller. Even now, when we’re both adults, I’m 3 1/2 inches taller. And I loved it. She won in other areas, she hit puberty first. And she loved to rub that in my face. Boy we were mean to each other. She would claim to have a better voice, a soprano to my second alto. I have better nails, she was a nail biter for so long that her nails are wide and squat. I was proud of that. We both talk incredibly fast. In fact, if you don’t know us well, you’d be hard pressed to determine which of us was talking to you over the phone. We actually tricked a friend once, on purpose. She was prettier, but I was smarter. And did I mention I’m taller.

I don’t have many memories of our early years. But when I’ve babysat young sisters close in age and I watch the way the older one treats the younger one, I feel shame. Something inside me tells me I did that. And even though it’s clearly human nature, I still feel guilt. We tormented each other, but I was perhaps a little better at it. She was definitely more sensitive, the wounds I inflicted years ago are still festering. That’s her choice, she loves to hold onto pain and wave it around like a flag of glory. I won’t take responsibility for her pain. And she hates me for that.

It’s been over 4 years since we stopped talking. 2 weeks after my daughter was born. Our “on again” lapse was tenuous at best. Basically a reconciliation about a year earlier for my wedding, heavily driven by my mom’s desire to live in an alternate reality where we’re a tight-knit loving family.

Well thanks to my dad’s death, and my sister’s need for a new drama/stressful project, plus her poverty/debt/greed, we’re back in communication. The estate lawyer, and more importantly, my husband, said to “walk away” from dealing with the mysterious trustee, who my sister now says should never have gotten any of his money. She’s on a mission, filing criminal charges. Let her have her crusade. I’d never be able to talk her out of it. No one could. She keeps texting me, updates and steps she’s taking, but also how stressed and anxious she is. Oh woe is her, look how she’s suffering. When my mom called me up to tell me what my sister was going to do, she was all riled up. I had to talk her off the ledge, I said to her, “he’s dead, why do you want to dig him back up?” I mean really, why waste another second on him. Let him fade away till even his memory is vague. Indifference is what he deserves. He’s gone, he no longer exists, it’s glorious. Why bring him back?? One of today’s texts from my sister says, “Hate that it came to this. That even after death he makes me sick.” Oh what a victim she is! How about instead you take responsibility for the choices you are making. Up to and including how you think and feel about what’s going on. Not everything needs to be a nuclear meltdown.

But maybe she needs that. I remember when I needed intensity all the time. It made me feel alive. I invited all sorts of brilliant but toxic/destructive people into my life. I enjoyed them thoroughly. The stings didn’t warn me to run, they were familiar and comfortable and understandable, and they produced endorphins. Yes, I got high off of cruelty, both giving and receiving. Somehow I justified it, believed I had it all under control. Do I miss it? Only theoretically. I don’t have the time or energy for drama anymore. What little energy I can scrape together is for myself, and my family (husband and daughter).

I feel like I haven’t really answered the question. Yes, birth order matters. I was looked up to (literally), copied, followed around. And it made me proud (and sometimes pridefully annoyed). And when my sister finally found her own power, was she embarrassed of the esteem she had had of me, and was she resentful of my position. I’m sure of it. Into our young adult years I was our mom’s favorite. I’m sure she knew it. And my damaged mom, overflowing with guilt for decisions she’s made and our resulting childhood, clings now to the only daughter that will throw her crumbs. Hint, that’s not me.

It’s complicated, but also simple. We all just want to feel important. We want to be listened to. Why couldn’t we be kind to each other – our parents didn’t model that behavior. Even after years and years of therapy, it took my auto-immune disease to humble me, and my teaching experience to learn to understand and love all kinds of personalities, and then, most importantly, my husband’s sweetness and honesty, to melt my ice fortress.

And now, it’s my daughter’s temper and impatience and stubbornness that is teaching me just how hard it is to break old behavior patterns. But that story is for another post…

What would you say has been the most difficult situation you have gone through during your illness? Why?

Everything.

  • Coming to consciousness in bed, but the weight of existence makes it impossible to move, let alone get out of bed.
  • Trying to pick something to wear, eat, do. None of it is interesting. Nothing inspires enthusiasm.
  • Stasis. Total paralysis. Even just being is exhausting.

But on good days –

  • Trying to wrangle focus or concentration to accomplish at least one thing on my to-do list.
  • Sucking up my full body anxiety to leave the house and go somewhere. Especially if it’s somewhere I haven’t been before. That’s its own extra special level of anxiety.
  • Trying to make small talk with someone. Can they tell I’m having a hard time hearing them over my racing heartbeat. Do they see me sweating. Nothing they’re saying means anything at all. I don’t care about their weather forecast. Are we done yet. Did I smile at all. Did I nod at the right places. When they ask what I’ve been up to, I can’t tell them, “misery and hell.” This is exhausting.
  • Going to an interview. Can they tell I had a nervous breakdown before I got here. Can they tell I’m wearing a wig. Do they know that I hate dressing up, wearing makeup. Can they tell there’s no way in hell I want to be here. I’m scared of failing, but even more scared of succeeding.
  • Being a parent. Can she tell I don’t want to do this. Does she think that I don’t love her because I don’t want to play with her. Does she think that my sadness and fatigue is her fault. Am I scarring her for life when I lose my patience.
  • Accepting love. I can’t imagine how you could love me. I don’t feel like I deserve it. I’m sure I’m screwing up this relationship with an amazing person.
  • Trying to sleep. If I just hold still maybe it will come. My heartbeat is so loud it is overwhelming. I’m cold, shivering. Then I start getting adrenaline jolts. Fire shooting through my body. Now I’m sweating, overheating. My thoughts are racing. The same terrible images or conversations or events keep cycling through my mind, over and over. I’m taking deep breaths, damnnit. Why isn’t this working. Should I get up. Should I take meds. Maybe if I just lay here I’ll finally fall asleep. How many hours until morning. I hate this. Why does everything have to be so hard.

What distorted thoughts about your personality or appearance are negative to your mental health?

I used to complain about my thick, long hair. It took 3 hours to dry. It was so heavy. It always got in the way. Man, I would give anything to have that again. Women are supposed to have long, beautiful hair – just look at the TV and magazines. And, in Southern California, just look around. To have long hair means youth, beauty, vitality, and fertility. Only the sick or dying have short or no hair. In the Middle Ages or Renaissance they’d cut the hair of women to punish them publicly. Well, just over 10 years ago my hairdresser told me there was a circle, the size of a quarter, of hair missing on the back of my head. It’s been a bumpy ride since then. I have spent most of those 10 years trying to hide it, feeling ashamed and ugly. I look in the mirror and see a stranger.

It’s time to embrace that stranger.

We’re all growing older, every minute. Which of us can look in the mirror and see the person we were 10 years ago? When we look, we see our flaws, our eyes are magnetically drawn. But when our friends look at us, they don’t see what we see. They see our smiles, our tears, the cute crinkles we get near our eyes when we laugh, they see our essence, our soul.

We are loved, just the way we are.

It is my challenge, and my goal, to remember this. To realize, recognize, that my value is not determined by the number of hairs on my head, but rather, by the love in my heart.

I see strangers looking, curiosity, sympathy. They probably think I have cancer. It’s funny almost, when I wear wigs I feel dishonest, like I’m hiding. And, now when I don’t, I almost feel dishonest as well, because the likely assumptions about my hair loss are inaccurate. Truth is, who we are shouldn’t be determined by how others see us. Our value is innate, inherent – we are already valuable without even doing anything. We already are valuable, just being. But which of us is so strong as to not be influenced by how others see us? Humans are social creatures – we need others.

It is my hope, and my desire, to surround myself with people that love me for who I am, and not what I look like.

As a result of your illness, have the things that make you happy in life changed? How and why?

I’m trying to think back before my illness, it’s a blurry vision. I was single, paid well for a job that was easy and fun. I used my extra funds to travel on the weekends, visit great friends, and eat really good food. Then the reality of my auto-immune disease finally seeped in past my barricades of denial and I sank. Down, down into a pit of despair and hopelessness. Then, after major lifestyle changes, there was a ray of light, remission, and I hauled myself up. Then I met my now husband and things were back to status quo. Good food and travel. Marriage, pregnancy – depression seeps in along the edges, a traumatic birth and bam, sunk down further than I ever was before, sure that there was no way out. Then one day, a couple months after starting meds, I see sunlight strike a pink flower on the neighbors fence. I am mesmerized by its beauty. And at that moment I know it’s possible to get better because in this one moment I can appreciate and enjoy something, even as small as this is. I climb back up, by my nails, I am stable again. But I am overwhelmed with motherhood and working. I have no time for me. I titrate off my meds. And I start sinking, bit by bit. I self-medicate, and continue to slip. I don’t talk about it, I don’t face it. I sink. Until, one day, I start falling fast, crash through bottom to a whole new low. One filled with anxiety and panic attacks all day and night long. I get back on meds, which bring me up to functional, just barely. I go through the a hospital outpatient program. I get on many different meds, some are really awful. Then I get a new antidepressant, and suddenly, could this really be, I feel stable. Not happy, per se, but solid. This gives me hope, lets me participate in life, accomplish, be productive (somewhat). But happy…hmm. Where is my happiness. I don’t have the carefree freedom I used to love. I am trapped in roles of responsibility. I am relied upon. There’s no off the clock for motherhood. Can I admit I have moments of glee when I take off for an hour with a friend and leave my child with my husband? It’s true. I find joy in those brief moments of freedom. To pretend to be untethered. I can almost smell it. But not for too long, because then the fear creeps in. The need for the familiar, a blanket of comfort and security. I can’t really be untethered again, too scary. I need my sometimes prison, it’s cozy. Yes I find moments of happiness watching my child and husband play. Yes I feel love and warmth spending time with my daughter reading. But more than anything else, I love sleep. I love wrapping myself up in that darkness and escaping. As brief as it can be, it’s the one way I can not be for a while, get a real break from everything. I always enjoyed sleeping, but now it’s my favorite thing in the whole world.

falling apart, literally

She leaned forward over the restaurant table, “This will make you stronger.” I whined back, “I don’t need to be stronger, I’m already too strong!” “Then this will make you humble,” she said quietly. I was 26 years old.

I am losing my hair. It’s called alopecia areata, and it’s called an auto-immune disease because they don’t know what caused it and they don’t know how to cure it. It doesn’t hurt, and it’s not going to kill me, but it’s destroying my sense of self. Little by little, strand by strand, my reflection is transforming into a stranger. An ugly stranger.

This is not the first time it has gotten this bad. Spontaneous regrowth over the last 10 years has allowed me to have hope of looking normal, before my hope has shattered and I grind through the grief cycle again,… as I shed, and shed, and shed.

I have beautiful wigs. I hate them. When I wear them I feel like a liar. I am ashamed and hiding under the hair, stressed and anxious that someone will notice, find me out. And wearing a wig is not something you can ignore. Its pressure and weight on top of my head is a constant reminder that I am hiding. It doesn’t hold perfectly still. A gust of wind, a minor shift, and my heart stops. And I am removed from whatever situation I am in, I can’t focus on anything but how much I hate wearing the wig.

My therapist says I am whole, exactly the way I am. I want to embrace this. So I have been experimenting. I’m not wearing my wig. I have been leaving the house well aware of how frightening (what’s left of) my hair looks. And no one has said anything. What would they say anyway. And so far, it appears that I’m treated normally. Every day that happens, every interaction that feels normal, helps me feel a little more confident about my choice not to wear a wig. But at some point I won’t be able to wear a ponytail anymore. I try not to think about that. I function through denial, pretending it doesn’t exist, actively and intentionally forgetting about it. I don’t really know what else to do. I worry about losing my mind with the rest of my hair. But I’m not there yet, and I can’t linger there without damaging my now. So I’ll just take it a day at a time.

it’s a race

Which will I run out of first, my shampoo or my hair.