So THIS is why we feel why we do!

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I am so excited to share this with you. I can’t remember where my friend, Kris, first talked about this. It may have been within the CH&M Community or it may have been on Instagram…but either way, as soon as I read a little bit about this I screamed, “This! This is what so many of us feel and can’t put into words!”

I asked if she would be up for telling us about the entire conversation, and she agreed. Kris, you are amazing, and thank you for sharing!

She said, “I think you have Disenfranchised Grief.”

I am sure I had a look of misunderstanding on my face as I thought to myself, disenfran…what?

But let me back this up a little for you so that you can better understand why she said this.

It was June of 2009 and we were in the middle of a crazy busy week with Vacation Bible School and as Jen Hatmaker likes to put it, I was in the weeds of being a busy mom to two young children.

I clearly remember standing in my kitchen and my hair literally just falling out of my head and onto my shoulders. I had been waking up that week with dozens of hairs all over my pillow and I remember thinking, “this has never happened, not even when I went through the post partum shed after babies”.

I couldn’t touch my hair without out a handful of long strands coming out.

I had no idea what was going on, but within a few weeks, I had this gut wrenching feeling that something was not right and it was not going to be okay.

I am a verbal processor (and an extrovert), so I immediately started talking to anyone that would listen, praying and hoping they would know someone who this same thing had happened to and they would tell me how it all turned out just fine for that person.

I literally prayed that I had a thyroid problem because a friend told me about her sister and how she was losing lots of hair. When they found out she had an overactive thyroid, she was prescribed medicine and it stopped falling out immediately.

Like almost everyone else on this journey, I went to many doctors and had many tests ran in hopes of explaining my sudden hair loss. At one point I received Iron fluids and B12 shots for several weeks, but sadly that did nothing to stop the loss.

At this time my emotions were out of control and depression had set in hard so I went on antidepressant medication and with counseling, I slowly began to feel better about life in general.

Unfortunately, the hair loss continued.

Over time, I somewhat came to terms with my hair loss, but it was never far from my thoughts. I had some good days but also had MANY bad days. I have lost count of the nights that I cried myself to sleep.

While I did a decent job of hiding it and could fake my happiness most days, it would sneak up on me every once in awhile if I was experiencing a significant loss and then my emotions would spiral back down again.

This would be the cycle for many years.

I remember my husband telling me that he felt sorry for me, he was sorry that I was going to “allow this to consume me for the rest of my life”…ouch!

I had friends who cared for me and I know that my husband tried hard to support me but I never felt like anyone truly understood.

It wasn’t until I found Lauren and this community last fall that I realized I was not alone in the suffering and I began to think that I just might find true happiness again.

Today, I am wearing hair occasionally, still mustering up the courage to wear it full time but I have so much more hope for the future. I know there are lots of options out there and I now have an amazing online support system.

All is well, or at least most of the time all is well. However, every once in awhile, I still feel the pangs of sadness.

My head tells me that it will all be okay but my heart still aches with a deep sadness so I decided to share this with my Spiritual Director.

(Side note: a Spiritual Director is not a counselor per se, but one who guides you on your spiritual journey. You often talk about similar things but they are not there to help you “work through issues”, they are more there for guidance and discerning in your life.)

I told her about the hair loss, when it had started and how I sometimes felt like it was getting in the way of being my authentic self.

I told her about all the joy that it taken from me and that while I was mostly okay, the pain still sometimes sneaks up on me.

I told her about the guilt I feel that for feeling sad about my hair when there are so many other people in this world suffering with what I deem as bigger and more serious issues.

I allowed myself to be vulnerable and put it all out there.

She kindly listened to me, and thank God, never said that dreaded response, “I don’t see any loss”, however she did say this…”I think you may have Disenfranchised Grief.”

Disenfranchised grief is a type of grief that is not acknowledged by society.

According to researcher Ken Doka, who coined this type of grief, it is defined as “grief that a person experiences when they incur a loss that is not or cannot be openly acknowledged, socially sanctioned or publicly mourned.”

Some examples of this type of grief may include the loss of a pet vs. the loss of a child, the death of a boyfriend/girlfriend vs. the death of a spouse or the loss of hair vs. the loss of a limb.

I had never heard of this type of grief and as I thought about what she said and did a little of my own research, I realized that she was onto something.

For the most part, society writes off hair loss.

Let’s face it, everyone’s hair will naturally thin at some point, so why was I making such a big deal about it?

My Spiritual Director also reminded me that this was something that women my age don’t typically experience, I was facing a type of loss that happens to much older adults, not at a young age of 36. I know a lot of you reading this experienced your own loss at a much younger age than I did, sadly, I imagine this will also ring very true with you, too.

As I have had time to reflect and understand this more, I have a new understanding of my grief.

This new knowledge has affirmed that while many people will not understand my loss, it is still genuine and it is a real loss for me.

I also acknowledge that these feelings of deep loss may never really fully go away and I am starting to feel less guilty about all of it.

As I look to the future, for the first time in several years, I am filled with so much hope and gratitude.

I am hopeful that with each day that passes, I am coming to terms more and more with all of this and I am full of gratitude for this amazing community.

This has been a wonderful reminder that beautiful and amazing things can come out of sad and painful experiences.

Who here has felt this before? Drop us a comment and let us know…I know I have.

Thank you, Kris, for attaching a name to how we feel! ~Lauren

27 thoughts on “So THIS is why we feel why we do!”

  1. Wow, what a great site to find. I relate to all of it, the feelings of unfairness, the self-flagellation for being concerned about such a comparatively trivial problem, the self-consciousness, the obsession with feeling exposed to pity from others, jealousy over others’ hair, why is it okay for men to go bald, now women, etc.
    My hair started thinning suddenly about 6 years ago. Bio-identical hormones helped bring it back, maybe from 60% to 80% of what it used to be, but in the past year, it seems to be going backwards again. It is not evenly thin, mostly at the crown and lately I seem to be also getting a receding hairline. Lately, the only way to make sure the back is completely covered is to literally spray it in place with hair spray, but then it feels awful and I have no clue how it looks to others.
    I hate that I am afraid to move my head around too much or get in the wind, for fear a big gap of scalp will be visible. Sheesh. I am almost 70. My sis has the same issues, so I know it is genetic, probably no way to fix it at this point. I feel like trying a topper, but am not sure I want to go down that road. Still looking for the miracle products to save my hair. Or the perfect hairstyle to disguise the hair loss. Thanks for letting me share.

  2. I am so so grateful to have read this. I have spent more tears than I care to on my hair loss, and couldn’t figure out why I just couldn’t let it go. I have all the same support Kris did, and I have a spouse who as much as he loves and supports me, doesn’t quite get it, and now I understand why.
    Thank you for writing this.

  3. Thank you for this. As others have said, it feels like validation to place a name for something that causes such inner pain. I started losing my hair since my teens and now I’m in my 40’s and the pain of not being “normal” hasn’t gone away. It’s only made worse when I think about what a trivial and shallow thing to be worried about considering everything else going on in the world but there you have it. I wore a bonded topper for 10 years and this year decided to opt for wigs. I opt for bangs to hide the hairline. I’ve practiced “glueing” with hair gel and also use a wig grip for easy putting on and taking off. Anyway I’ve been following your blog for a while and am continuously inspired by you and all the other ladies who post. Thank you.

  4. A wonderful post…Anne I hope you don’t mind me saying God Bless you, you’ve been through so much! I am 64 and have been dealing with this hair loss for about 5 years. I can relate to each and every woman here and like one of the ladies mentioned, I so admire the younger gals who are dealing with this terrible loss as best they can. I wear a baseball cap most days, going to the gym and running around and put my topper on if we go out to dinner or somewhere special. I had terrible sadness for a few years, but have resolved myself to what is and trying to be grateful for the positive things in my life, my health, family,etc. I think this is a different journey for every woman, but I do hope you can each find the strength that you may not even realize you have to get through your bad days.

  5. I’m glad this community exists thanks to Lauren and all you ladies. However, I still feel very alone. I know I am blessed with relatively good health, job, parents, and friends. Nonetheless, I cannot help but feel envious of those of you who are married and have children. At 45, with hair progressively thinning since 15, I am not likely to fulfill that dream. Not only do I feel that my hair loss has negatively impacted me socially and professionally, but I feel that it has impeded me from being myself. i use camouflage hair spray when I go to special events and, otherwise, often wear a hat. I’m not ready to take the leap to helper hair etc but realize that I cannot go on like this either. If, by some miracle, I did find my soulmate I would constantly worry about revealing my true self for fear of losing him 🙁

  6. I just started wearing my toppers 3 months ago. Yep this post hit home for me. Every time I passed a mirror I mournedmy hair. Still do. I am a cancer survivor for 23 years. I stopped grieving my breast loss quicker than my hair. We are all lucky for this site. Thanks Lauren!

  7. My hairs been falling on and off since I was 15. I’m now 26, getting married in 6 weeks, and there isn’t a day that goes by that I don’t ask “why me” or get jealous of someone else’s hair.

    I wear tape in hair extensions, which have really given me a massive confidence boost, but I know I’ll eventually transition to toppers then wigs.

    I’ve had all the blood work done in the world and there is nothing medically wrong with me.

    I can’t control it, so why let myself get upset about it? Easier said than done, but I definitely mourn the loss internally constantly.

  8. Perfectly said! Thank you for sharing. It’s amazing how far we have come. We should be proud, my son (20 years old) remembers how sad I was for over a year, now 3 years later tells me I’m the toughest person he knows. What a great example to show people around us! I thank god for my hairloss believe it or not because it has made me a stronger, kinder, empathetic, god loving person. Also listened to a lot of Joel Osteen on Sirius radio.. he will help you believe! Hugs ladies

  9. Great post Lauren and Kris! We’ve all experienced these feelings, it definitely resonates with all of us. In a lot of ways I’m so grateful my hair loss started as a teen. It’s given me time to come to terms with that grief and find peace.

    Unimportant note: You cited your sources! ?

  10. I totally get the invisible disability thing! I have chronic migraine that I sometimes take an herbal remedy for which can cause hair loss. On top of that I have thyroid issues and hereditary alopaecia, so I’ve been dealt a triple whammy. I’ve seen this coming and bought my first topper in March of this year. I’m still not comfortable wearing it 100% of the time because I can’t seem to find a close enough color match so no one notices. I find myself avoiding church where I’m in contact with many people who have known me for years. It doesn’t help when I get a compliment on my hair when I’m wearing it! It means they’ve noticed.
    For me, I think my loss of “hair freedom” is the reason for my grief, so far. I have not lost so much that strangers look at me oddly, but that’s probably coming. I’ve always been fascinated with wearable hair and want to make a seamless transition. I’m just not looking forward to having to wear it ALL the time.

  11. Dear Lauren,
    I very much enjoy your website and your newsletters – thank you – and a big thank you to Kris for sharing her story through you, which I know resonates with probably all of us hair loss ladies. She has indeed put it perfectly.
    Losing our hair is a big deal. I am in my 60’s now and have some chronic troublesome/painful health challenges, but I can honestly say that the irreversible hair loss that began about 5 years ago affects me the most. (But thank goodness for toppers!) So, for all of you young women for whom this has become an issue so early in life, my heart goes out to you and I applaud your courage not only in dealing with it, but in sharing your experiences and supporting other women this way.
    Blessings to you all. xx

    • I AM in my 60’s as well….male pattern baldness runs in my family. Ive had three transplants…the most recent in March and the new hair will not grow in for a few more months. I would love to use a topper for easy hair days….But i guess I am afraid it will be detectable…I want hair that really looks natural etc. How many toppers did you try on before the one you fell in love with?
      Thank you

  12. It is good to have a name for this grief I feel so often. I noticed a slight thinness in my hair at 27. I thought that perhaps wearing my hair in a ponytail or bun was causing this because who loses their hair at 27? No woman I ever knew. My Mom had a head of glorious dark curls until the day she died. My hair slowly began to thin more and more. Everything changed in 2012 when I got sick, a case of mrsa that almost killed me. 5 operations, a diagnosis of diabetes and PCOS I left the hospital three weeks later and I left much of my hair behind. For a while it seemed biotin was helping and then it stopped. I did all the ticks we have all done, Topik, colored dry shampoo and eventually clip in bangs. I finally bought a mono topper and so now I can look like myself again. The thing is this is my only topper so I only wear it out and once in awhile at home. So everyday if I am not going anywhere I see myself without my “hair” and it hurts. I never feel truly pretty though my husband tells me I am lovely all the time (He even bought my hair for a Valentines gift) I don’t feel whole. We look at TV and see those girls with lovely hair and I feel a pain in my heart. I love to watch beauty Youtubers but to see them with uch glorious manes hurts. As woman we are expected to have beautiful hair and it is hard to see what we do not have everywhere. I still have health issues but what bothers me the most? The loss of my hair. I don’t know if I will ever stop grieving for what I lost. I hope to be able to buy another topper sometime in the next few years so I can always wear one and always feel like me..

  13. Couldn’t agree more. In the beginning, I felt hopeful that my hair loss could be explained (and solved) as a medical issue. After countless tests and appointments, it became clear that this problem didn’t have a solution. I was 25, preparing to get married, and otherwise healthy – but such a dark time emotionally as I grieved for my thin (but formerly scalp-covering) hair.

    I’m 11 years down the road now, and while I’m no longer consumed by my hair loss (thank you, helper hair), I still feel a pang of sadness when I catch a glimpse of my head in the mirror after I take a shower, or see a wide swath of scalp after I take off my topper. It’s nice to have a name – and validation – for that feeling.

    Thanks so much for sharing.

  14. I can relate to every word. Hair loss is devastating. Early on I remember uttering to my husband that I don’t think I can live without hair. I was teetering in being depressed. I no longer feel that way, thank goodness!

    I’ve been wearing a topper for the last two months and I can honestly say that I’ve gone from crying, obsessing and avoiding social events to not giving hair a thought. It’s still falling out, it continues to shed, but I figure I ll wear a great quality wig once my topper is no longer an option. My husband commented recently that since wearing helper hair I’m different. He doesn’t mean the way I look. He said I’m acting differently, more like the old me, more confident. I feel like the the old me, but my hair is better!

  15. My heart breaks for Kris and I think it is exactly that, disenfranchised because by other people’s arbitrary standards it doesn’t measure up to sufficient loss for grief.
    Ironically I have pretty significant hair loss at the back of my head from lying on the sofa for 8 months sick, and overall because of meds for yes, you guessed it, Stage 4 Breast Cancer in my bones, most of my bones. But here is the kicker, other than my hair and I do wear wigs some of the time, I look fricking great. Slender, I’ve lost 30+ lbs and no appetite at all but they see thigh gap and flat belly, perfect nails, well hell I’m disabled so I don’t see patients any more so I can finally grow nails and wear polish, and I look more rested than they have ever seen my sorry haggard self. I used to work myself to death.
    So despite the fact that I’m dying, slowly but surely, they see me looking great and they feel jealous that they can’t stay home with their dogs and play in the yard. They don’t hear the nausea vomiting, diarrhea, insomnia and constant bone pain, I live with pain patches and avoid anything else because of the constipation.
    They don’t see why I might be sad, lonely and yes, depressed. My daughter just was married and it was under the wire that I was there, she’s having a baby in January, will my gorgeous looking self be there? I certainly hope so.
    So for all of you who feel that people diminish your loss and the depth of your grief for the basic “right” of every woman to have her damn “crowning glory” and the fuss made about color and cut and texture when all you want is your head covered with hair. I hear you because you have to deal with those insensitive self absorbed folk every day and you want to say, have a week, or even a day in my shoes. It sucks and you expect me to be a flipping sport about it and it’s no big deal. The flip it isn’t.
    I hope you don’t think I’m trying to one up y’all, I’m truly not but it’s the best analogy I can come up with, I don’t have alopecia or any of the other causes of hair loss and I’m 64 not 26 but I hear you Kris… I hear you. Your grief is disenfranchised and people trivialize something they know nothing about. It is one of the leading causes for dermatology consultation, but if it isn’t them it doesn’t count and even if it is them, they still don’t get it for you.
    People are ashamed and embarrassed by wearing wigs and hair but think nothing of plastic surgery for cosmetic reasons. The world is a cold cruel place.

    • Thank you so much for chiming in, and I’m sorry to hear about your diagnosis. Yes, I totally get how what people see on the outside (in our case, with a full head of faux hair) doesn’t match up to what we might be feeling–physical or otherwise–on the inside. I’ll be thinking about you and using up all my wishes that you’ll be feeling as best as you can possibly be when you meet your grandchild in January. <3 Is this your first grandbaby?

    • Anne Lynn Jarman I have never walked in your shoes but I know others that have and I am willing strength to you. Other than your diagnosis I know one other thing about you: You have a beautiful written voice. I hope you will keep writing for as long as you can in order for your grandchild to know you. It will be a priceless gift. I can add nothing to what you said about hair loss. Don’t know why mine continues to fall like rain. Don’t know why doctors don’t understand the emotional element. Don’t know why society makes it so damn important. You will be in my heart Anne. I do know that.

  16. Wow, thank you for putting a name to this. I can’t tell you how many times I have apologized to doctors for bringing my hair loss to them or have not said anything when a friend asks how they can pray for me. You’re right, it’s not the loss of a limb, and it feels shallow but it is still certainly loss. Thank you!

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