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In 1989, Dr. Kenneth Doka coined the phrase "Disenfranchised Grief" to describe loss that isn't openly acknowledged, publicly mourned or sanctioned by society.
Since the transplant system was built around the needs of the recipient, living donors have no recognized role from which to express themselves, and no social support systems to aide them. In fact, society can actively discourage the living donor from asserting their right to grieve by calling them 'selfish', minimizing their experience by comparing it to the recipient's, or telling the living donor to 'get over it' or to 'let it go'. Sometimes this is a reflection of the erroneous belief that donating an organ is no big deal. Other times, there is a judgmental element to the reactions, emphasizing the need to preserve the idea of living donation as always positive and good, and the needs/wants of the recipient to always outweigh those of the living donor.
A living donor is entitled to their own feelings, thoughts and experiences, and has the right to express them.
Doka's research outlined reasons why an individual's grief might be disenfranchised. How these might apply to living donors is as follows:
1. The loss isn't a person:
Despite marketing taglines to the contrary, the loss of a kidney does irrevocably alter one's body. The living kidney donor goes from healthier-than-average to requiring regular, lifetime monitoring of renal function and all it implies, plus a much closer scrutiny of diet and medications. The decision to be a kidney donor means assuming a higher risk of cardiac disease and kidney failure. Often, in the LD's mind (and those of others), those dangers pale in comparison to the idea of 'saving a life'.
The medical industry has moved to laparoscopic surgery for many reasons, but one of which is the lessening of post-operative scars. In fact, many hospitals now market their surgical departments with taglines like "be back in your bikini in two weeks" or "major surgery through the belly button" because they know that living donors (and other surgical patients) often regard these scars as reminders of a traumatic period in one's life, associated with great fear, uncertainty, disease and pain.
This doesn't have to be so. With time and more importantly, substantial amounts of healing, these same scars can become emblems of survival, strength and courage. After all, scars don't form on the deceased.
Loss of Kidney (Donated Organ)
Not every transplant is successful. When it isn't, this means the literal death of the donated organ. But even if the recipient flourishes, the living donor has still experienced a loss.
As Dr. Vicky Young wrote in her dissertation, traditional Native American teaching opposes living donation because it will leave the living donor 'unbalanced'*. The fact a kidney isn't external like a limb, eye or breast doesn't preclude an individual grieving its loss. After all, it kept the donor alive and healthy for many years.
Some have expressed a heightened awareness or sensitivity toward the left side of their body (the left kidney is most often removed for donation). This can be correlated with a sense of emptiness, incompleteness or half-ness (104)
Some living donors hold a memorial service as a means of expressing their feelings and finding closure, while others write poems or songs, and still others paint or sculpt as a means of catharsis.
Loss of Hope
The great majority of living donors are helping a loved one, so they are emotionally invested in their recipient's health and well-being. The months leading up to the transplant can be full of cautious optimism and giddy anticipation. The recipient's continued illness, or the news of a graft failure, especially when not ascribed to rejection, or due to "unexplained causes", can cause a prolonged sense of failure, hopelessness, guilt and grief. These feelings are often exacerbated by news stories of successful transplants, bragging by other living donors, or the minimization of the experience by friends, family or the public.
50% of living donors in one study revealed profound anxiety and a sense of hopelessness about life, indeterminate of the transplant's outcome (104)
2. The relationship isn't seen as 'real' or others disapprove. This is especially relevant in an unrelated or anonymous donation.
Recipient's Death or Illness
Sometimes recipients die, suffer major complications, or simply do not regain improved health.
Transplants are not cures. Even if a recipient improves for a time, the graft can eventually fail (most recipients require multiple transplants to achieve a normal lifespan). This can cause the living donor to have feelings of failure, remorse, guilt and mourning.
3. The griever is excluded.
In the event of kidney chains and pairs, unrelated and anonymous donation, the living donor's organ is being transplanted into a stranger and not a loved one. In those cases, it's not unusual for the recipient's family to not include the donor in their mourning.
In Western culture, grief often seems to be limited to family members, as indicated by most companies' strict bereavement policies. Consequently, donating to a close friend can also result in alienation from the recipient's family. One living donor reported being told that it was 'too painful' for the family to see her because she reminded them of their deceased loved one (the recipient).
Even in cases of a successful transplant, sometimes the recipient or the recipient's family/friends does not respond to the living donor in the way s/he expects. This is not to imply the living donor has unrealistic expectations.
"After the surgery, Stephens stayed in bed for days...She was in pain. She was exhausted, but the worst part is that she never heard from Randall. She was devastated. She had given him so much. She was going through all of this pain for him and he couldn't even say Thank You?" (128)
Here is a forum thread on what one living donor referred to as "recipient alienation".
Pearl, an LKD, writes: One of the biggest hurdles for me was how let down I felt by my family, when so many promises came to nothing – but underneath that was the anger I felt at myself for believing them.(147)
4. The grief process, or the ways in which one grieves, is not what others expect and/or accept.
Being a living donor is an incredibly unique experience, shared and understood by very few. It is common to utilize analogies - miscarriage, amputation, mastectomy, stillbirth - to explain the myriad feelings accompanying the aftermath.
Everyone grieves differently and stress can cause people to engage in uncharacteristic and drastic behavior. Bereavement is linked to an increased risk of depressive episodes, anxiety symptoms and disorders, and increased use of alcohol, drugs and cigarettes (103). This can create a disconnect between the living donor and her/his loved ones, resulting in an increased sense of isolation and worsening an already tumultuous situation.
We need to allow [the bereaved] to teach us what their experience is, rather than constructing some set of goals and expectations that we expect them to meet and achieve.(154)
It would be natural for a struggling living donor to seek solace in the company of other living donors. Unfortunately, there is a dearth, if not complete absence, of community or transplant-related support groups for living donors, so most turn to the Internet. While most living donors are sympathetic, some are only interested in perpetuating their identity as 'heroes' or 'martyrs' and will engage in victim blaming and denial when confronted with these issues. It is imperative to ignore those messages and find comfort in those who are accepting and understanding.
Not only can other people disenfranchise a living donor's grief, the LD can disenfranchise their own grief by denying or repressing their feelings or experience. Too commonly, a living donor compares their experience with that of the recipient and finds theirs lacking. In other words, they guilt or shame themselves out of experiencing their grief and sadness.
While grief is an individual experience, finding meaning in that loss relies on interactions with others. Grief disenfranchisement can delay and/or complicate meaning finding, an essential part of healing.
*Native Americans have and do donate organs, deceased and living. As with many cultures, persons can behave in contrast to their official religious beliefs.