Today I dyed my hair… and pulled hair out in clumps

Today I dyed my hair. This will come as no shock to people who know me. Surprisingly bright red hair is not my natural color, though when I was in High School it was naturally auburn…. But I digress.


For a few months I’ve been noticing a lot of hair laying around in various places. People would comment on how they always knew where I had been because there were long red hairs clinging to things. My whole life I’ve had very thick hair, so shedding was not unusual for me, but this seemed to be quite a bit more.

Then I started noticing I would pull out handfuls of hair when running my hands through it. And then I looked at my hairbrush and was astonished at the amount of hair clumped on it. At first I thought it was just from stress, shedding a bit more than usual. But after a week going by with a massive clump of hair on my brush I started to think this was one of the symptoms of Lupus…. Hair loss.

I didn’t think a whole lot about it. I told my friends and people didn’t seem to really find it bad, neither did I.

But today I dyed my hair. I really saw the patches of no hair, and the ability to see my scalp all the way around my head, and the receding hair-line I always took for granted. I pulled away clumps of hair into my hand and sobbed.

Lovely Lupus rash

It seems like such a trivial thing, having hair. But it’s just another visual change that has happened with my Lupus diagnosis. Most things are invisible…. You can’t see that I’m absolutely exhausted and am struggling to finish the day. You can’t see that I have purple bruising under my eyes and a bright red butterfly rash because I’ve gotten quite adept at makeup. People always say how I look healthy so I must be feeling better!

What a shitty thing to hear when you feel like rubbish. I try to take it as a compliment at my hiding skills. After years of living with pain you end up having a new normal. Things that before were absolutely terrifying and unbearable are now everyday or frequent occurrences. Have the nurse take 12 vials of blood? No problem. Rate your pain has become hilarious. Let’s see…. Today I feel like someone is shoving knives into my stomach, my neck hurts so bad I can’t turn my head very far, my knuckles are so inflamed I can’t use my hands well and speaking of hands I just flung 3 days worth of samples into the air because of my tremors. So…like a 4? Mostly just an everyday baseline… so maybe a 3. Let’s go with 3.

But most of that is invisible. And I can pretend I have a semi-normal life as a grad student. I can pretend that of course I will have the energy to get my PhD. Of course I would love to go to lunch with you and lets just ignore the fact that one of the most kind and sweet people in my life has been scheduling with me to have a girls night and I have cancelled every time. EVERY TIME. Why? Because by Friday I am a zombie. What do I do all weekend? HAHAHAHA. I SLEEP. I recover from the week of actually getting out of bed. Are my meds working? Who the hell knows? Maybe I’d be worse without them. I’m certainly not going to get off them and find out. Can’t they fix me? My god, put some money into research (basic research too my friends) and maybe someone will figure it out. Until then? The joys of anti-malarial drugs, immune-suppressants and anti-inflammatories.

Don’t mind me while I sit on the floor in the middle of lab. I’m fine. Just trying to make the world stop spinning. Keep talking and I’ll try and keep up.

But today I dyed my hair. And saw a real visual sign of Lupus. And it sucks. And it’s terrifying. And I want to just give up and say forget it all, this is too hard and I’m way too tired. But not today. Today I will cry and I will bitch and moan. And tomorrow I will go to work happy that at least one milestone has been accomplished with my research (this, strangely, happened this morning when I found a genetic combo I’ve been looking for for about a year!) and maybe I’ll be able to finish. At least that’s what I’ll pretend. Just like the rest of it.


One weeks worth of hair in my hairbrush

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