Grief

Grief, in and of itself, isn't pathological; mourning is simply a recognition of change. Even something desired or positive can result in feelings of loss for what one has left behind (switching jobs, moving, etc). Becoming a living donor is a life-altering event, the consequences of which are life-long; it's natural to grieve for the pre-donation person and body.

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 entire 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 actively discourages 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'. 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.

Doka's research outlined predictors of disenfranchised grief. How these might apply to living donors is as follows:

1. The loss isn't a person:

Whole/Healthy Body

Despite marketing taglines to the contrary, the loss of a kidney does irrevocably alter one's body. The living donor goes from healthier-than-average to an individual requiring regular, lifetime monitoring of renal function (and all it implies), plus a much closer scrutiny of diet and medications. In a matter of minutes, the living donor assumed a higher risk of cardiac disease and kidney failure, but in the prospective living donor's mind, those possibilities pale in comparison to the idea of 'saving a life' especially if s/he was young when donating.

Scars

The medical industry has moved to laparascopic 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.

With time and more importantly, substantial amounts of healing, these same scars can become emblems of survival, strength and courage.

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 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 that recipient's health and well-being. The months leading up to the transplant can be full of cautious optimism and giddy anticipation. 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, and bragging by other living donors.

50% 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

Not every transplant ends successfully. Recipients can die, suffer major complications or simply 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), sending the living donor into 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, 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 the original poster coined "recipient alienation".

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.

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.

Disenfranchising grief can intensify feelings of anger, guilt and powerlessness. Often, grief is accompanied by other crises, such as financial constraints, legal difficulties, or ambivalent feelings toward the recipient, family or loved ones, etc. These concurrent events can complicate the grief process, exacerbating and lengthening its severity and manifestations.

Complicated Grief symptoms include (100):

-Strong yearnings for lost person
-Trouble accepting the loss
-Inability to trust others
-Bitterness or anger related to the loss
-Numbness/detachment
-Feeling that life is empty or meaningless
-Feeling that future is bleak
-Feeling agitated

Another set of researchers (102) suggests the following diagnostic criteria for Complicated Grief Disorder, the loss occurring at least 14 months earlier.

In the last month, any three of the following seven symptoms with a severity that interferes with daily functioning:

Intrusive symptoms
1. Unbidden memories or intrusive fantasies related to the loss
2. Strong spells or pangs of severe emotion related to the loss
3. Distressingly strong yearnings or wishes that the deceased were there

Signs of avoidance and failure to adapt
4. Feelings of being far too much alone or personally empty
5. Excessively staying away from people, places, or activities that remind the subject of the [traumatic event]
6. Unusual levels of sleep interference
7. Loss of interest in work, social, caretaking, or recreational activities to a maladaptive degree

Bereavement has been linked to immune suppression, increased doctors' visits, poorer physical health, sleep pattern disturbances, change in eating habits, headaches, suicide and death (103).

One study found that those who scored high for Traumatic Grief at the six-month mark were at a higher risk of cancer, high blood pressure, and heart trouble 13 and 25 months after the inciting event. (103)

Traumatic Grief Inventory (101):

-I feel that life is empty or meaningless
-I feel myself longing and yearning for [life prior to donation]
-I feel like the future holds no meaning or purpose
-I feel unable to imagine life being fulfilling
-I feel like I have become numb since...
-I feel lonely ever since...
-I feel stunned, dazed, or shocked
-I think about [the situation/event] so much that it can be hard for me to do the things I normally do
-The [situation/event] feels overwhelming or devastating
-I feel that I have trouble accepting the [situation/event]

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*Native Americans have and do donate organs, deceased and living. As with many cultures, persons can behave in contrast to their official religious beliefs.