A Piece of Me

If you’ve hung out with me at all over the course of the past year or so, odds are you have something to remember me by.

My hair has been falling out steadily for a good 18 months or so. It’s on your laptop bag. It’s on your backpack. It’s on your sweater. If you’ve hugged me it’s probably on your shoulder.

today's hair loss. suck it lupus

Sorry about that.

Turns out this Lupus thing makes my hair thin. Who knew? It was always just a bit of a joke around here. I shed. I would shed and we would laugh.

ha ha look more hair!

But I’ve noticed something lately that isn’t as funny. I can see the spots on my scalp. Now, Aaron assures me I’m the only one who can see them, but I can see them.

Maybe it’s all in my mind. But I swear my part is very… party. Bigger. Whiter.

So now with the usual vitamins and meds, I’ve taken to hat buying. Because what’s a girl to do who’s scalp is monstrously thinning but buy cute hats? My Mom suggested I cut my hair, so I’m not brushing it as much … but I like that at least my hair coming out the back of a hat looks normal.

Maybe I’m over-reacting.

Maybe it’s really not as bad as I’m imagining and it’s just given me something to focus on. Maybe this very thin line of hair on my scalp is yet another very vain and silly bump in this summer filled with hospitals and I need to just get over it.

Or buy more hats.


  1. Buy more hats because learning to cope is not getting over it. There is a mourning period to progress through when you are diagnosed with a chronic illness. Give yourself permission to wallow for a few months. It helps.
    .-= mamikaze´s last blog ..we can’t get it right for her =-.

  2. Uggh. I found the hair loss associated with my lupus very distressing. There were no specific treatments for it – at least none were offered – but once the rest of the disease was under control my hair filled out again although its still not what it was. I look crap in hats though so I went for shorter cuts.

  3. Definitely, go with lots of cute hats and keep your hair longer!

  4. Hug. That is all.

  5. I lost a bunch of hair in 2006 and blogged about buying a pink wig: http://surrenderdorothy.typepad.com/surrender_dorothy/2006/11/pink_wig_it_is.html

    Kidding aside, hair is important. My mom wore a wig for a few years when she was undergoing chemo. When I was losing my hair so bad, I seriously considered it. Once I got past the shock and awe of OMG MY HAIR IS FALLING OUT, of course.
    .-= Rita Arens´s last blog ..Rita Arens BlackBerry- 2009-2010 =-.

  6. Biotin. I had the same thing happen to me when I first got diagnosed with Lupus and taking biotin really helped. GNC sells it and whole foods, it’s a vitamin.
    .-= jodifur´s last blog ..How I Ruined My Nephews Life With Breadcrumbs =-.

  7. My mom has thinning hair – bald spots even – so she wears hair pieces, not full wigs – they’re made so that they match her hair color and texture – half the time I don’t realize she’s wearing one. It’s just enough to give her confidence, not enough to feel like she’s hiding.

    Either way, you’ll figure it out – take some time to deal with the feelings and emotions of everything, then make some choices. In the meantime, hats are awesome!
    .-= pgoodness´s last blog ..Broken =-.

  8. I agree with the Biotin, I have lots of hair, but I lose a lot as well because of hormone problems. I love you and I am so sorry this is happening. I am fighting your lupus with my MIND and a few bucks.

    Nothing wrong with hats, this is a kickass shop http://www.villagehatshop.com
    The lightweight wool, tropical wool, linen, Kangol hats are awesome. My kid had very thin hair so she wears hats a lot to protect her from the sun. We also live in the cold tundra, so if hats make you feel prettier for a while, fuck it and buy one or four.

    .-= jenB´s last blog ..Wring it out and lay it on a towel to dry =-.

  9. As I mentioned before I have SLE myself and to me the hardest part, even more than the joint pain has been the thinning hair. Mine has gotten worse and worse over the last 8 years. I have even resorted to trying men’s Rogaine scalp foam, high protein diet, hair and nail vitamins, biotin supplements. Let me be the first to let you know, nothing that works on normal hair loss is going to work on your Lupus hair loss. I have joked with my husband that he is going to have to pony up 5 grand so that I can go to the Bosley insitute and have the micro hair grafting surgery where they take hair from the back of your head and poke them all down into the front of your head. He jokes and says NO just get a wig. But does he really want a wife that walks around town with a WIG on. No matter how expensive or great the wig is you can ALWAYS tell it’s a wig. I’m not a hat person. I don’t have any advice for you. SO, I am useless. But I just wanted to let you know not to buy into any false hope.

  10. Pamela Anderson says:

    It is not false hope to be wishing for your hair to regenerate. Mine did. I also had several inches of my colon removed due to lupus. Do NOT give up hope of regaining your health. I am in remission after some tough times. Do not listen to negative people. Just keep telling Lupus to suck it & that you will be the victor. Hang in there. I will keep following your blog. I am sending you positive thoughts.

  11. Thanks Pamela

  12. My hair got really thin in the year after I was diagnosed & in the hospital with MS. I freaked out and did a bunch of research, and found out that LOTS of people who go thru a major, stressful “body events” like surgery & hospitalization (basically your life for the past year) lose their hair. It’s a reaction to the shock of all of those intrusive, painful experiences.

    Obviously Lupus is different from MS, and everyone’s body reacts differently, but for what it’s worth, sometimes people going through bad medical shit lose their hair for a while, and often it grows back.

    That said, I LOVE a good wig. When you’re ready, let’s talk fake hair. Hey, it’s good enough for Britney! Maybe we can even figure out how make those motherfuckers at Anthem pay for Ken Paves extensions.
    .-= cat lincoln´s last blog ..Chief Scoffs at Danger in the Petrified Forest =-.

  13. Erin, I know you are going through a tremendous hell these days. I just want to say that I’ve been losing my hair, too. Not from Lupus, which sucks Big Time. But from PCOS. It started years ago. It stopped when I was pregnant. And now I’m losing my hair again. I look in the mirror and cry sometimes, because I can see my scalp. The other day I had someone ask me if I was stressed because they noticed the top of my head is thinning.

    I feel like I’m being robbed of my femininity.

    I hate this. I hate what you’re going through. I know my troubles don’t compare, but I do know how you feel.

    Sending love your way.

  14. @fastfwdgreen says:

    I just found you on Twitter and found your blog as well. I too have #suckitlupus and shed my hair. I am very grateful for your honesty and I look forward to following you and sharing in this journey toward greater wellness. I understand we have more difficulty assimilating our “B” vitamins, so the Biotin supplements are a good idea for us regarding hair loss. I am not sure it makes a lot of difference, but it seems to lessen the loss a bit. There is a lot of loss with this disease, trickle, trickle, trickle. But it won’t take our spirit, no it won’t!
    Much love to you.

  15. Hi my name is Gail and i was diagnosed with Lupus in 2007. I just want to say stay encouraged. I too have had hair thinning. I am now taking a vitamin supplement that has biotin and i can see the difference in my hair, it has gotten thicker and longer.


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