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