Monday, March 28, 2011

Lupus hair loss: managing the fallout

Remember that hair loss I mentioned a few months ago, the fallout that I thought was subsiding? Well...I was being optimistic. I thought it was on its way out (the episode, not the hair), but I'm still losing strands by the dozen. It's okay, though. This, too, shall pass. But man, can it be unsettling.

Speaking as someone who's lost a good portion of her hair multiple times (I've lost at least 40% of the volume four times, and at least 70% of the volume one additional time), I've assessed that there are several stages involved in hair loss. Here's how I would describe them:

Stage 1: "Wow. I think I'm losing my hair. That's kinda crazy." In this beginning stage, you're almost in awe of the loss. It's never good to lose your hair, of course, but the loss is so minimal, you're just kind of surprised that this lupus symptom is actually happening to you, just like it says it will in all of the lupus books. Still, you openly talk about the loss...kind of like it's good party conversation. It's not noticeable to anyone but you, so you don't give it a second thought, or at least not much of one. You think you might even just be blowing the whole thing out of proportion - optimistically thinking that the strands will cease to fall after a week or two.

Stage 2: "Hmmm. I'm really losing a lot of hair. Like, a lot." This is the stage where you can confirm, without a doubt, that hair loss is taking place. You don't know what's causing it, but you would like it to stop. Now. It's still not noticeable to anyone - maybe your spouse or close friends - but you know the volume is rapidly decreasing. It's no longer a topic of conversation - although you may consult a few close friends to see if they've ever experienced anything like this.

Stage 3: "Okay. This hair loss is not cool." I don't like this stage. It's the stage right before the stage where you decide to proactively deal with the loss. Until then, you're just kind of holding on for dear life. Literally. It's as if you can feel each and every strand falling from your head, and you do whatever you can to keep each one in its place. You no longer mindlessly fidget with your hair, and you don't tousle mid-day to make it look fuller or bouncier. You just try to keep your hair as still as possible in order to minimize the loss. At this point, you don't talk about your hair, and you don't want anyone else to mention your lovely locks (or lack thereof) either.

Stage 4: "Yes, those are bald spots. And yes, I'm losing my hair. ..but it's okay. I'm dealing with it." This is the stage where you find out what you're really made of. Although you may think this is the worst stage of all, it's not. As far as the bare spots on your head - sure, it's not going to get much worse than this. But as far as your mindset, and your ability to cope with and manage the fallout - things are looking up.

So you're losing your hair? Yes, it's upsetting and frustrating, and you wish it weren't happening to you. But you realize that you're more than just a few strands of hair on your head. Your identity isn't wrapped up in your appearance, and your long wavy hair (or short curly 'do) doesn't define you. It can't; currently, you don't have much hair to speak of, and yet you're still here, present and accounted for. You're still mustering up the strength and courage to deal with your hair loss, and with lupus, for that matter, one strand at a time.

This is about the time you look yourself in the mirror, admit that your hair situation is pretty grim, but decide that you're a big enough girl to deal with it. You've accepted this as a manifestation of your illness, one that you can't control, but one that isn't going to get the best of you. Even though you don't know how or when it will get better, you're going to hold your head up high, and believe that one day, that head will once again be full of hair.

Maybe there's even a little new hair growth on which you can and should pin your hopes. Hair does grow. It just takes time. So in that meantime, it's time to pull out all the stops. You cut way back on your shampoo days, you forgo the hair dryer and the straightening brush (because that's, like, the ultimate hair loss no-no), and you resort to barrettes, hair bands and anything else that keeps those remaining wisps under control. Just by waking up every morning and facing those bald spots, you're reminding yourself that lupus isn't going to win. Not now, now ever. You're stronger and more resilient...even in spite of your hair loss.

A friend and I were recently discussing the ol' hair loss issue, and I was reminded of all of the things that I've done in the past to manage the fallout, this most recent episode as well as in hair losses past. Good news is that I currently have spiky new growth at least an inch long over most of my head, so I know new hair is on its way. It's a real pain to contend with that short, stubby stuff as it's growing in...but I'm not complaining. New hair is new hair, plain and simple!

On Wednesday, I'll give you my short list of to-do's when I'm faced with the fallout, most of which I've employed myself over the past few weeks. If you have any additional tricks or tips - let me know. I'll be sure to add them!

121 comments:

Anonymous said...

Hair extensions can help ( the newest kind that uses beads not glue), a keratin treatment helps with the ugly texture that my hair has taken on...I hope and pray I have a full head of hair again one day...in the meantime, I am taking biotin and being gentle with what I have. I would love to hear of anything that works!

Sara Gorman said...

Oh, tell me about the texture! That's probably why my short, stubby growth is so difficult to tame. I was just lamenting my hair styling challenges to my au pair (the benefits of having another grown up girl in the house...), and she was suggesting I use a little product (gel, mousse, and the like) to tame my cowlicks. Perhaps I'll add a little keratin treatment to my shopping list, too!

Thanks for sharing!

Anonymous said...

I have tried every product that promises any type of result. Keratin has been the only thing that has made my hair look like hair again. I wish I had more hair, but what I have is finally in good condition. Make sure you get the treatment done at a reputable salon, or you can cause more damage ( if done poorly). Also, the WEN line of hair products seems to be gentler and easier on the hair than anything else I have tried.

theinvisibleside said...

I have been through all of those stages this past year. Losing my hair has been the most emotionally painful part of my lupus/UCTD diagnosis. I have lost all of my hair on my head, most of the hair on my body and now my eyebrows! Treatments did not work for me and despite my current medication regime my hair is not growing. The good side of this is that it is not painful and does effect my ability to live life. I have my moments, but as you have so eloquently stated hair does not define who we are and I would rather be judged on my contributions to society than what I look like.

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Sara Gorman said...

Thanks, everyone, for sharing your thoughts.

theinvisibleside- hang in there...sounds like you're fighting the battles you can, and letting the other ones (like your hairloss) fall by the wayside. Thanks for finding the positive side of things, and for reminding us that our contributions are what really matter. Hopefully, it diminishes the importance of that hairloss...reading your thoughts certainly helps me!

inekka said...

I wish i wasn't losing my losing my hair... I know things could be worse, but I still wish I wasn't losing my hair. I don't feel good about it. No one really knows what it feels like to have your "crown" taken from you. I have atleast 50% loss right now... I miss my hair... I miss being able to style it like i want to. I miss the confidence or assurance I had, that you dont realize you had until you dont have it. Sometimes I feel embarrassed. Ppl say im beautiful all the time,(they see me with "my hair done") but what about without hair? Would you think i was beautiful then? I love myself but sometimes i dont feel pretty... I feel im living a double life... I try to wallow in it... Im just praying that things get better. I want my hair to grow back. But if this is the worse thing that would happen, i should be indeed grateful.

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Gina said...

You guys have some really good info here, both blog and comments. Appreciate all the help and thanks for sharing your expertise.

Anonymous said...

Sara, When you were in Stage 3 of hair loss, how long did it take for you to see about an inch of new hair growth? I'm desperately looking for the light at the end of the tunnel. I think I can cope with the hair loss as long as I know there is hope around the corner.

Anonymous said...

I mean my hair used to be super long but now I have really short haie. I really want long hair, cause I have to wear my hair in puff balls (childish) or an afro (or if im super drastic braids.) So now im thinking of washing my hair every day. Is that a good idea?

Paola Basilio said...

I know how it could be frustrating to see changes with our physical appearance. Hair loss, for me, is only natural. I mean, as we age, we start losing hair as well. But there are several solutions out there. One is hair transplant. Anyway, I think you are a great person, Sara, and nothing beats facing life’s challenges with a smile on your face. =D

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Sara Gorman said...

When you get the chance, let me know how you're doing. i'm just seeing this comment for the first time today--and i image you're at a different stage altogether. thanks for sharing. no doubt your honesty helped someone else learn to cope!!

Sara Gorman said...

Just seeing this comment now, and hoping that you're at a different stage than the last time you wrote!

to answer your question--i can't say how long it took for me to see growth, simply because i can't pinpoint when i started losing it. But hair DOES typically grow back...it's the waiting that's so hard!! Thanks so much for sharing

Sara Gorman said...

Again, just seeing this now...but in my experience, washing less frequently definitely helped keep the hair on my head. When i washed it, i lost clumps, when i didn't wash it, i only lost strands. just a product of moving around the hair, i guess. But, you have to go with what works for you!

Sara Gorman said...

Thanks for your kind words! And thanks for sharing--it's a good reminder as to what's to come, and how to deal with it gracefully. :)

Anonymous said...

I am going thru my 2nd bout of hair loss. The first bout was a real eye opener. Funny how stress makes it worse yet who cant stress about it. Reading this blog brought back memmories exactly as you said. I am again desparately looking for any ways to slow the loss until new growth comes in again. I remember being so happy before to see the new growth and knowing it was not gone forever. Last time new growth was already coming even while I was still losing the long. But it did mean losing length from mid back to neck length and not a good look for me. My hair was always too thick but watching it leave my head by the 100's I cannot even explain the dread of wondering how far it would go.
I had been very ill in July thru Aug 2010 hair loss started approx end of Sept and new growth was noticed by Oct but the remaining hair was so bad off and thinned out I just had to have it cuttoff and evened out. Now here I am again June 2013 was very ill in middle of Feb 2013 and hair loss became really noticeable middle of May and still going strong middle of June. I have cut back on washing every 3rd day. I keep it braided as much as possible especially over night. I am taking biotin 5000 Mg per day.
I am going to get it trimmed up and get some layers going now to help reduce the noticability of the loss some. Hopefully it will help when the new growth comes in.
Keratin hair treatment are too expensive when done by trustworthy sources and really are not good for you or your hair even tho the immediate results look good so please do research or ask your doc if it is ok for you first.
Good luck to everyone.

Sara Gorman said...

Thanks so much for sharing your story, and for the advice on keratin. Here's hoping the layers do wonders. New growth is around the corner! Take care and thanks - SG

Anonymous said...

I've experienced hair loss for the first time. Its growing back. Slowly. But still shedding when i wash it. I wish that would stop. I'm taking 400mg of Plaquinel

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Hanan koubaissi said...

reading your posts was very touchy yet so depressing.. i am a lupus patient too this started around 2 years ago when why hair started waving goodbye !! it was a shock at first then i got used to the idea actually its hard too see these changes.. my hair was long and very thick i lost around 50% of my hair and i have a short hair now.. my doctor said that if i take my medicines correctly eventually i will experience growing hair but this is not true because im always taking my pills and i feel better now but still losing y hair !! i can see small tufts but the hair im losing is much greater than these tuft im afraid of being bald someday dunno what to do i was strong but now im not actually im writing in a hand and wiping my tears in the other

Sara Gorman said...

Losing your hair IS cause for tears, I agree. It was one of the hardest thing for me - but if you're seeing tufts, that's the best sign indicating that it really is growing back.

That said, I still wouldn't hesitate to mention it now and again to your doctor. You want to make sure that he/she continues to see new growth, and you don't want to miss the opportunity to consult a dermatologist for other options, if it becomes necessary. But know that waiting for those tufts to fill in took more patience than I even knew I had!

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Jennifer said...

I was wondering if anyone has just shaved their head when it gets to the point I am at now, patches gone, remaining hair brittle and totally lifeless. I have had lupus over 20 years and I have experienced hair loss before but not like this. I am fortunate that I had very thick hair to begin with but this is the worst it has ever been. Thanks for suggesting keratin. I am currently on biotin. No changes yet though.

Sara Gorman said...

jennifer--sorry your hair loss has hit a new level. i think it's so frustrating to have had lupus for a decade or more, and to have new (or new versions of) issues to deal with! i've experienced hair loss about four times, one time far worse than any others. that time, i decided tocut everything off. i didn't have the stylist shave it, but rather, it was more like a buzz. i recommend taking a friend if u decide to do it. it's a monumental step--and while scary, it left me feeling the most inspired and energized! i was finally doing somethig proactive, rather than just continuing to nurse my poor strands of hair i had left in defense. that said, i only did that once. the other three tines i was right in just waiting it out. go with what feels right, and good luck!

Dr. Sara Salas said...

I’m sorry you had to go through that. Have you considered going for procedures that will reverse your hair loss? Of course, you have to ask your doctor first before undergoing any treatment. It doesn’t have be a surgical procedure though. There are solutions such as Minoxidil, which stimulates hair follicles when applied to the scalp. Dr. Sara @ BajaHairCenter.com

social action now said...

I'm sorry that someone is taking Paquinel. I held out for a long time because I don't like taking drugs but finally got desperate. If I hadn't noticed after one month I would have completely bald so I stopped. I checked the Iternet for Paquinel and it causes hair loss - how can doctors prescribe that to help? That was a couple of years ago and now I am almost bald. Tired of wearing wigs and trying to find something somewhere to help.

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Sara Gorman said...

social action - some of these drugs we take have crummy side effects, huh? I personally haven't had too much hair loss due to plaquenil...it's seems to always come from other sources. :( That said, I wish you the best and hope you're able to find a better solution soon - Wigs can be so tricky. my neighbor is currently undergoing cancer treatment, and is trying to build up her hat collection. it's not a perfect alternative, but she's making it work!

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Kautondra Rule said...

I am going through the same thing :( I've started taking pictures weekly but to be honest, if I never stop coming my hair, it never stops falling out. There was a time my hair was gorgeous and people would aww at how beautiful it was, now I just try not to touch it at all. Someday's I wear a scarf to give it a rest. As you said this to shall pass, so I guess we gotta get with the program.....

Sara Gorman said...

I think wearing scarves (or a hats) now and again provides a much needed rest to our mental stamina! I found that my "I'm okay with this" attitude went in waves. I'd be fine for a week straight, and then I would see an old picture, or be primping for a night out, and get frustrated all over again. But getting through those isolated moments gave me the boost I needed to make it through! Thx for sharing!

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Miss Muse said...

I am so happy that I found this site as I can relate to so many of these comments! I was just recently diagnosed with Lupus. It was scary, but also such a relief to finally know what was wrong with me.

I've had 4 major sheds in the past 4 years, and yes, they are heartbreaking and scary at the same time. But I'm not my hair. Although I've thinned out a lot and I miss my old thick beautiful curls, I realize that the people who matter in my life could care less about my thinning and would still love me if I lost it all. And as for strangers, I don't really care what they think. I just remind myself of what really matters: family, friends, giving back, and beating lupus ;)

Hang in there everybody and know that you are not alone!

Sara Gorman said...

Thx for your great comments. I've always thought that once u lose your hair, u realize very quickly how little people really care about it. You build it up in your mind, but once it's gone, everybody just finds a way to deal with it. Including you!! :) thx for the encouraging words!

rosalyn said...

Ros mortis uk. I have been sitting here getting upset at the loss of my once enviable locks that are now like my granddaughters hair. In fact she now has thicker hair than I do. It is horrible and I feel myself going through grieving for it. However life does go on and like many bloggers here if you can live with all the other challengers lupus brings then although this is most womens worst ni ghtmare.i think it also creates the most character and teaches you what is important. Does anyone have advice about if or when to wear wigs and at what stage of hair loss to start so that not everyone knows it is a wig! Or even if a weave is a better way to go. It's real hair or acrylic wig better and does anyone else also feel embarrassed at going to the hairdresser who used to tend to your thick locks?

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Hair Transplant in Surat treatment will be able to give you new life & confidence which you lost because of your hair loss & baldness problem.After treatment you will find that you are a completely different , Beautiful and young.

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Anonymous said...

Hi,

I am suffering from hair loss due to discoid lupus on the scalp. I have pretty much lost 80% of my hair on the right side; there is a very think line of hair at the front, which I use to cover up my big bald spot. All the doctors I have met have ruled out the possibility of hair regrowth, because the scalp is badly scarred. They are just trying to confine the spreading of the lesion right now. I hope it will not spread anymore, especially towards the side that has the thin line left; and if it does, I will not be able to cover up my spot anymore.

I have started looking for wigs/hair extensions and in fact anything that I can try to cover that spot.

It's quite frustrating for me, since I was the girl with the most beautiful hair growing up; and that was kind of my identity. No matter how much I try to pacify myself saying that "its ok, its just hair, I am still alive" - it is still very difficult.

Any ideas or inputs on what to try for wigs and hair extensions would be great.

Thanks.

Sara Gorman said...

Know that you are very brave!! My hope is that you're able to find a few wigs that suit you well. I've met so many people with discoid lupus over the years who wear wigs - but I never knew they did until they told me! The right wig or a cute scarf/hair piece can work wonders. I know looking cute and feeling cute can be two separate things, and can take time - so I wish you well on both fronts!!

Sara Gorman said...

Know that you are very brave!! My hope is that you're able to find a few wigs that suit you well. I've met so many people with discoid lupus over the years who wear wigs - but I never knew they did until they told me! The right wig or a cute scarf/hair piece can work wonders. I know looking cute and feeling cute can be two separate things, and can take time - so I wish you well on both fronts!!

Sara Gorman said...

Know that you are very brave!! My hope is that you're able to find a few wigs that suit you well. I've met so many people with discoid lupus over the years who wear wigs - but I never knew they did until they told me! The right wig or a cute scarf/hair piece can work wonders. I know looking cute and feeling cute can be two separate things, and can take time - so I wish you well on both fronts!!

Jessica Morgan said...
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Jessica Morgan said...
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foulhag said...

I guess I'm in stage 2. The other day I just said 'fuck it' went to the salon to get my head shaved. The lady there noticed some baby hairs and refused to shave my head. Instead she gave me a bottle of hair growth stuff. I've been using it for a week and notice lots of baby hairs sprouting up. Also my scalp is now skin color instead of red and tender. It's called kaminomoto hair growth, give it a try it just might work. My hair is still falling out in clumps but now have hope that they'll grow back. I'm also going to try supplementing with vitamin E. Hope this helps someone who doesn't have too much scarring yet.

Sara Gorman said...

A big congratulations on the baby hairs!!! That is such a good sign, and you're on your way to a thicker head of hair. Hooray! So glad the hair growth worked for you. Best wishes as those clumps stop dropping, and the hairs keep growing. Only good things to come!

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