It was one thing to invade every part of my life. To cause life-altering fatigue that is questioned or flat out not believed by others, to cause joint pain in my hands preventing me from working like I need and want to, to dry my eyes to the point where they are painful to even open, to cause me to go through years of being undiagnosed, misdiagnosed, tests, failed treatments, and the stress, guilt and grief of living with an invisible disease. Fine, you want to completely alter every part of my life – OK. But now you’ve gone too far…you’re messing with my daughter.
I talked before about how convinced I am about the genetic link in our family with autoimmune disease. My maternal grandmother lived her life with symptoms that I now recognize as identical to mine – yet she never received a diagnosis…she lived her life with people (including doctors) waiving off her symptoms and never validating them with a correct diagnosis. My mom’s sister and cousin also have various autoimmune issues. So that makes me, my maternal grandmother, maternal aunt and maternal second cousin…definitely a link there. And those are just the ones I know about.
From the time I began learning about autoimmune disease, I saw that it often travels in families and many of them affect far, far more women than men (not all – but a lot of them are found in a far greater number of women than men). I worried about this as a parent. I’ve had other worries with how I explained it to my kids, dealing with my self-imposed guilt over not feeling like the best mom because I’m physically limited with my fatigue, pain, weakness and other symptoms and so on. But my biggest fear ever was seeing my children struggle with autoimmune disease.
I have an 11 year old son and a 9 year old daughter. Due to the lopsided nature of autoimmune disease with respect to gender, I worried more about my daughter. But even still, they’re young…I didn’t begin having symptoms until I was in my late twenties and even that is on the young-ish side for many autoimmune disease. Not that they can’t happen in children – they can and unfortunately do – it’s just the chances are lower so it wasn’t quite as an acute worry as the other worries I have right now – such as how my current symptoms affect my parenting, etc.
About a month ago my mom was sitting in my daughter’s room with us as we watched and played with my daughter’s new bunny (that she begged and planned for during the entire last year and finally got for her birthday). My mom pointed to the back of my daughter’s head and asked what was going on there. I looked and saw a patch that was about the size of a quarter that was completely without hair. It’s right on the top back of her head where her “whirly” is – that place where the part along the top of your head stops and your hair hangs to the back instead of to the sides. It was completely smooth – no little pieces growing in. I told my mom I hadn’t noticed it and that I’d keep an eye on it. It couldn’t have been there long because it was actually very noticeable and we all wouldn’t have gone long without seeing it.
I have to admit that I kinda forgot about it. Sounds horrible, I know, but it was end of school, both kids’ birthdays, dance recital, ball tournaments – basically our busiest time of the year. I’d see it every once in a while and remind myself to call the doctor about it. (That’s another reason it may have taken me a little while to call – our doctor quit practice medicine and although I’ve had my initial/establishing visit with our new primary care doctor, the kids aren’t due for their annual appointments yet so they haven’t seen the new doctor and I know it’s a pain to get someone into a doctor’s office for an acute problem appointment if they’re not an established patient yet).
My daughter went for her hair cut appointment (every 8 weeks for her) and the stylist pointed it out to me and asked about it, too. I told her the history about it. By this point it had been about 2.5 weeks since my mom had pointed it out to me. There was still zero re-growth. Even if the hair had been pulled out in that location (not likely as I’m pretty sure my daughter would have screamed bloody murder if a chunk of hair the size of a quarter was pulled out at once!), it would have regrowth by now! I re-vowed to call the doctor’s office. The stylist (she also happens to be a long-time friend of mine) was the first person to mention alopecia to me as she looked at the spot and then looked all through my daughters head to see if there were any other spots.
By the time she got in to see the doctor it had been probably 3.5-4 weeks since we first noticed it. The doctor confirmed that it’s alopecia areata (immune system attacking the hair follicles – causing the hair to shed and the follicles to not go through the regrowth cycle) and set us up with a pediatric dermatologist as well as a pediatric hematologist (blood work the doctor had drawn that day showed that she’s anemic – something I and the other women in my family with autoimmune disease have had on and off our entire lives – mild, unspecific anemia). However the hematologist appointment isn’t for 2 weeks and the dermatologist appointment is 6 weeks from now.
From what I’ve read about alopecia and what the doctor said during the primary care visit, this may be a one-time incident, it may grow back in 6-12 months, it may respond to topical treatments by the dermatologist, but it also might not. It might not be a one-time thing – and the fact that it happened before she hit puberty (again, she’s only 9) and that she’s in a history with autoimmune disease means her changes of this NOT being a one-time thing are much greater.
It’s not physically painful for her. Alopecia itself doesn’t led to another other health complications, other than the fact that it starts her down the autoimmune disease pathway – and that means that more autoimmune diseases may join the party as she grows up.
But it is hurting her. My daughter is a beautiful, confident, smart, creative, loving, kind, self-determined, independent, “sport model” (as my dad calls her) of a girl that at 8 years old began getting on stage and dancing solo routines at dance competitions in front of crowds and judges sitting right at her feet and judging her. She’s everything I’d hoped she be – independent, caring, strong-willed (although sometimes I wish a little less strong willed when she’s dealing with me!), poised and a delight to be around.
But it’s affecting her. Other than when she would go to dance, she would almost NEVER wear her hair pulled back. I’ve fought with her for years and years (remember that strong-willed thing!) about letting me put her hair up in cute styles to get it out of her face when she plays or just so we can see her pretty little face (she’s won many photogenic contests at the dance competitions – she really is a very pretty little girl). She would NEVER let me do it. Only for dance class and competitions and occasionally swimming. That’s it.
Now she doesn’t leave the house without her hair in a ponytail because it hides her bald spot. She’ll pat the back of her head with the ponytail she put in and ask if I can see her “spot.” She had a few friends come over to spend the night for a very belated birthday party for her (remember – their birthdays are always at our busiest time of the year so their friend parties always end up being weeks later…oops!) and right before they were expected to show up she ran upstairs saying she needed to “fix her hair” before they came over. One of her friends fixed the other girls’ hair during the party (like girls tend to do – give each other “make overs”) but my daughter didn’t let her friend do her hair – she was embarrassed to have her friends see her “spot.” She’ll ask me when I look at it every few days if the hair is growing back in – “not even at the edges of the spot?” she’ll ask.
After all that I’ve been through the last few years – nothing has broken my heart like watching my amazingly beautiful and confident daughter begin to be embarrassed by a bald spot that is likely the first symptom of her own body attacking itself.
So, yes, autoimmune disease, you’ve gone to far – you’ve messed with my gorgeous, happy little girl. But what the hell can I do about it? I can’t stop it. I can’t physically cure her any more than I can myself. I can love her and support her and make sure she knows that she’s absolutely amazing inside and out. But I can’t stop it. I can’t fix it.
I’d take back every single complaint I’ve ever said about my own struggle with autoimmune disease. I’d never utter another word about what I’m going through if I could take it away from her forever – spare her from any and all of it. But unfortunately it doesn’t work that way – so instead I’ll continue to talk about autoimmune disease in any way I can hoping that it will help educate, increase awareness and somehow further understanding.