Disenfranchised Grief … and HYSTERECTOMY

Disenfranchised grief … I remember first finding this term during a time of loss … a loss that I couldn’t express to most everyone and definitely not publicly.  It was unacceptable.  It still is.  I found a niche where I could fully express the pain and grief of this loss … it has made all the difference in the world.  However, there is still an occasional urge to open up and talk about this period of disenfranchised grief … this heartbreaking loss.

But I don’t.

I hold back.

I keep it in.

Locked away.

Only a few people have access to this part of my ❤

 Disenfranchised grief …

cant speak

Disenfranchised grief occurs when an individual’s grief experience is not recognized or acknowledged by others. Disenfranchised grievers are frequently overlooked or ignored, lack opportunities to express their emotions, receive diminished social support and sympathy from others, and may be deprived of opportunities to participate in mourning rituals. In other words, these individuals are denied the ‘right to grieve.’ Disenfranchisement is a significant problem for grievers because it can inhibit coping and complicate the grief process. ~ Hannah M. Davidson (2010).

Some examples of disenfranchised grief include but are not limited to:

  • Infertility issues
  • Miscarriage or stillbirth … any perinatal loss
  • Pregnancy termination
  • Giving a child up for adoption
  • Job loss
  • Incest
  • Rape
  • Break-up between same sex partners
  • Diagnosis of HIV
  • Surgery
  • Death of:
    • an ex-spouse
    • a co-worker
    • a pet
    • an online friend
    • a same-sex partner
    • a step-parent or step-child
    • other non-blood relationships (friends, boyfriend/girlfriend, in-laws, neighbors, celebrity, et al.)

Dr. Kenneth Doka gave this experience a name in the mid ’80s. Dr. Doka’s book on this topic is the foundation for much of the further theory and discussion of disenfranchised grief.  HERE is the man himself (see video below).

BTW the video with Dr. Doka is NOT some stuffy old man going, “Blah, blah, blah” boring you to pieces.  It’s actually a very thoughtful video only about five minutes in duration — only five minutes for a an enlightening concept.

One helpful article explaining this concept is:  Disen-whaaaat? Understanding Disenfranchised Grief.

Another insightful article by Elizabeth Kupferman is: the shame experience of disenfranchised grief.

In regard to hysterectomy it may be difficult to talk about this with others.  Many people see surgery as a solution to a problem and when the organ or “problem” is removed there’s a misperception that there’s nothing further to discuss.  The loss of a uterus can be emotionally upsetting to many women.  Some women view a hysterectomy as a loss of their femininity or ability to produce and have children.

On top of the loss of a uterus a woman may be dealing with a cancer diagnosis.  A sudden diagnosis with a need for hysterectomy often doesn’t allow a woman time to accept the loss and immediately she nosedives into grief; in the meantime, family and friends have side-stepped her loss focusing only on a surgery to increase her chance of survival.  This woman’s grief over loss has now become trivialized by her supporters … she has now entered the realm of disenfranchisement where her grief cannot be acknowledged.  She is told things like, “You are lucky to be alive!”, “Glad they got the diagnosis when they did!”, “You still have one (two, three, etc.) other children,” and other comments that completely dismiss her desire to speak about her loss.  She is left saying only things that are palatably acceptable to those around her.

Hysterectomy is difficult to discuss with most men because they can’t relate to problems this organ may have caused the woman.  Others feel squeamish when the word surgery comes up.  And there have even been friends or family members who refuse to discuss others’ personal grief because they feel forced into a voyeuristic role; these individuals fail to understand just how important it is for most women to have the ability to open up to communicate their loss …  to speak words out loud making the loss real initiating the grieving process leading to emotional healing.

Personally, I have been able to open up to enough people about my hysterectomy … the right people who were able to provide the emotional acceptance and support I needed when I needed it.  The most difficult part of deciding to have a hysterectomy in my experience was coming to terms with the emotional aspect — the realization of never birthing my own children.  Once I came to this pivotal acceptance, the physical part, the loss of a life-time organ was easy.

Whatever our loss, when grief is acknowledged it is easier to bear. ~ Gina Stepp


See also:

Can you hear me NOW?

As my day nurse S. was giving change-of-shift report to my new nurse C. I was about to experience a completely different nurse.

During the report that was being given by nurse S. to nurse C. I could tell something was amiss with my nightshift nurse. I thought she was: A) uncaring, not giving a damn about what I was saying, or B) completely absorbed in her work or C) hearing-impaired.  I was leaning on choice C because I truly hoped no nurse could be that cold in their care.

Gradually as the evening shift progressed and I asked and said things that went unaddressed or were answered oddly by nurse C.  Finally I asked C. if she had a hearing deficit.  She looked at me like I was psychic and exclaimed, “How did you know?!”  I explained that when the other nurse was present how she didn’t seem to understand some important things being conveyed and how I could tell she wasn’t hearing me.  She was genuinely caught by surprise.

That night nurse seemed somewhat relieved that I had caught on to her loss.  She explained that earlier this year she had suffered such severe allergies that she had lost a significant portion of her hearing that required her to wear hearing aids.  C. explained that she had recently moved to my city from Arizona after caring for her mother who died of complications from Alzheimer’s dementia to be closer to her daughter and grandchild.  We did have a record allergy year in my city by the way.

I also relayed my own story of sensory loss in the Spring of 2013 when I lost my sense of smell for quite some time after a cold and how I couldn’t even smell the fur of my cat who had just been put to sleep.  I longed for the last scent of my furry friend of over seventeen years … and I also told her that a loss is a loss, empathizing with her recent hearing loss.

That night nurse explained how her manager had not been understanding about her sudden hearing loss belivieving that she had fabricated the whole thing primarily based on a phone conversation the nurse had with her manager. The nurse manager had told her, “Well, you sure seemed able to hear me just fine on the phone!”  I explained to that nurse that I deal with patients all day in-person, but mostly by phone and those that have hearing impairments can often hear me better when they are on the phone than when they are right next to me.  It was like a lightbulb momemt for her — someone validating her real life experience.  I felt bad for her in this moment … the fact that she had a loss but couldn’t convey the reality of the effect it had on her own life to her manager and other nurses.

This nurse is a woman who has had her sense of hearing intact all her life and now is dealing with this loss.  This is a serious loss.  She is too embarrassed and ashamed to admit that she has this deficit.  I told her that as a patient, my nursing profession aside, that she needs to tell her patients about this hearing loss because of how she can be perceived and for safety reasons. I adamantly emphasized that there was absolutely nothing to be ashamed of!  I actually saw her smile … I don’t think this woman has smiled in quite some time.  She felt understood and accepted while most importantly heard.

But I still don’t think she quite caught on how important it will be for her to reveal her hearing loss; she only mentioned that she would push her hair behind her ears hoping that her patients would see her hearing aids.  I was tired and medicated from my surgery, truly incapable of getting on a pushy persuasive bandwagon at that time to tell her that by simply putting her hair behind hers ears would not be enough to communicate to her patients that she may not hear them.

I feel bad for her because losing a sense you’ve been used to all your life is sad … it’s a grieving condition.  And most importantly her communication and rapport with others will be negatively effected … I didn’t like her in the beginning because I thought she didn’t care, but after finding the real reason for our communication problems, grace was able to make its way into our brief relationship, my hard feelings about her softened.  If she doesn’t let others know about this deficit what will they come away thinking?

I thought about writing a letter to her manager about this issue, but realize there will be no way I convey in written form the tender nature of this serious matter that should be addressed if only for safety reasons alone.  When I’m more healed I plan to talk to her manager in-person and talk about this hearing deficit that C. has, hoping that the nurse manager can become more understanding of C.’s loss and also encourage C. to openly and shamelessly share this deficit she has with her future patients.

I do have some more thoughts on C. … but somehow they seem immaterial at this point when I see her in this light.  I don’t think she was the kindest nurse I’ve ever had and I was uncomfortable when my Foley catheter kinked up and the tubes to the SCDs dug into my legs — she didn’t readily fix these items and I was reduced to that needy, whiney patient that I don’t even really like to care for.  And how much of this was due to C.’s age (mid-to-late 60s I presume), her adjustment reaction to a new hearing impairment, recovering from recent family stress, and possibly being burned out professionally with feeling that her manager didn’t appreciate her?  I give her only the benefit of the doubt.

And I kept a positive attitude … all the time doing that unfair thing of comparing one person to another — my day nurse to my night nurse.  Truthfully I longed for the next morning when I would see S.’s shiny bright face again.


Was it the nurse or the Dilaudid?

After being settled into my room a bit and my husband having gone home to feed the cats I found myself opening up to nurse S. — the lovely day shift nurse.  I don’t think I meant to intentionally have this conversation with her … it just happened … either that or it was the Dilaudid.  I’d like to think it was the connection I had with her with the baby steps I’ve been taking at trusting others.

Nurse S. had a lot of charting to do and had to do her final checks on me.  The charting system is in each patients room on a computer.  I don’t even know how I brought up the topic … but somehow it started with being OK about being on a postpartum floor even though I was childless.

I told her that I was pregnant two years ago and that our baby had a chromosomal abnormality — trisomy 21 to be specific.  I told her how it was a surprise pregnancy as I had years and years of infertility never believing I would be able to conceive.  I was 43 at the time.

I told her how my husband and I elected to terminate the pregnancy … I cried … she cried.  She held my hand.  I don’t feel like she judged me.  I told her how I couldn’t give my daughter a broken life starting with a likely heart surgery to follow with mental and physical disabilities effecting her entire life.  I told her that telling her my story wasn’t easy and how scary it was for me.  She simply listened, nodding her head at all the appropriate times.


I feel like I may have taken up a lot of her time by all my talking … I apologized and she replied by saying it was OK, that this was what was needed in this time … for her to listen to me.  I believe she genuinely meant that.

And I still wonder had I not been on the Dilaudid PCA if I would have opened up so easily … I’m simply going to tell myself that it was the special rapport I had with one caring and kind nurse leaving it at that.


More personal stories about TFMR (termination for medical reasons): http://1in10blog.wordpress.com