Recognizing Grieving in Patients with Advanced Hair Loss
Dr. Elisabeth Kubler-Ross was a pioneer in understanding how we grieve. Further studies and observations over the years has shown that the way we grieve is similar regardless of what it is we are actually grieving.
As Dr. Kubler-Ross first described nearly 50 years ago, grieving commonly occurs through 5 stages that include 1) denial and isolation 2) anger 3) bargaining 4) depression and finally 5) acceptance. Not all stages have the same length and don't necessarily occur one after the other like the chapters in a book. Of course, there is tremendous variation in how people grieve but Kubler-Ross's model has served as a valuable model for decades.
Grieving in the World of Hair Medicine
There is not a lot written about grieving and hair loss. You'll never hear about the topic at any meeting. It has become increasingly clear to me over the years that some forms of hair loss lead to such profound changes in a person's appearance that they trigger the same grieving responses as one might have with any illness or cosmetic alteration in appearance. Patients with rapid alopecia areata, scarring alopecies, hair shedding disorders as well as androgenetic alopecia often grieve the loss of an appearance they once had. For many, hair loss brings profound changes in one's self-identify and overall self confidence. Many affected patients also progress through the grieving stages of denial, anger, bargaining, depression and acceptance. The difference with grieving hair loss and other types of grieving is that the potential exists for some types of hair loss to improve with treatment - and therefore the loss might not be permanent. This too affects how a patient might grieve loss of something that might only be temporarily lost (but might not be).
As a physician my goal is not only to help diagnose and treat a patient's hair loss but also to support them in their loss. We don't often talk about it in our profession but I am well aware that patients with hair loss do grieve. Some patients are angry, some have come to accept their hair loss, some deny that it is much of an issue, some are depressed and just aren't themselves. In other words, all the stages of grieving are present if we care to ever take a look. Often as physicians we are focuses on the diagnosis and prognosis and what treatment plan is best that we forget about the human sitting in front of us who wishes they had the hair of their youth.
Recognizing Patterns in the Clinic
I am interested in better understanding the emotional and psychological responses that people have when they lose hair. As part of the earliest stages of grieving (denial and anger) I frequently see several patterns of grief expressed by patients. I believe we must learn to recognize these patterns so that we can better help our patients cope.
Let me share some examples of the subtleties of these patterns of grieving. These are helpful reminders to physicians of what signs we should be watching for in patients who need support.
1. Order Lab Tests
An example of one of these patterns starts out with a simple request by a current patient to have a few lab tests ordered. The request usually comes unexpectedly and the patient asks for a new blood test requisition "lab form" to be mailed out to them in hopes that something else shows up on the next set of results. The patient usually feels that a particular test they have heard about from a friend or read about online will provide valuable information to aid in their diagnosis or treatment.
Comments from patients might include:
I would like all my hormones checked. Can you order for me?
I want all my labs checked again. Is that okay?
I have read that additional thyroid tests may be helpful?
You did not order test X, and my research suggests it is important, can you order for me?
Could this simply be a patient who has done their research rather than a patient who is expressing any degree of grief? Sure. But the pattern is common among those who are grieving loss of their hair.
2. Appointment Cancelling
Or consider the patient with an advanced form of hair loss who cancels their appointment only to rebook again several months later. This pattern too is seen from time to time. During the months between the cancelled appointment and the rebooked appointment the patient may visit other clinics, and even search online for various treatments and purchase various pills, shampoos and tonics. Of course, there can be some genuine desire on the patient's part to solve the hair loss issue themselves. This is very normal and in some cases it can even be a healthy and appropriate response to solving one's health issues. Usually, though, it gets taken too far. Some patients who are grieving their hair fall prey to unscrupulous tactics and false promises and may spend considerable money. How do I know? Some share all these events mentioned above with me. Most of course, don't.
As Dr Kubler Ross's 5 stages of grieving remind us, there is often some degree of denial that enters into how patients think and view their experiences in the clinic ("I could not possibly have this condition my doctor is saying because nobody in my family has it" or "The condition the doctor is saying I have looks nothing like the photos I see online." There may also be some bargaining ("If I just use a better shampoo brand everything will all be okay" or "If I just start eating better and cut out the junk my hair will improve." The stages of grieving must always be considered.
3. Doubting the Diagnosis
Some patients are more open with me about sharing their doubts. Sometimes a patient will ask me if there is a possibility that the diagnosis was wrong. Sometimes they will inform me that I am wrong. This is quite normal and healthy and I encourage patients to do all the doubting they want and need. Some patients, however, go to great efforts to cast doubt on their diagnosis. Their may be exchanges of emails, print outs of various sources of information from the internet. Various opinions from the patient's friends, colleagues and family only add to the doubt the patient feels and the time they spend in this cycle. As a physician, I am always open to the possibility my diagnosis is wrong.
Anger & Grief
Some patients who are grieving are angry. They may be angry at the physician or the anger may be directed at only a single member of the physician's team. We must always recognize this and understand that anger is not always directed in the right way. One's diagnostic skills must not be swayed by the degree of doubt or anger from the patient. I can tell you that it is quite normal for some individuals to be very angry as they grieve. That is something you don't hear much about at a hair meeting or conference but it's part of being a hair physician.
Patients who rebook their appointments, ask for more tests or doubt their physician's diagnosis may simply be just that. A busy parent, an inquisitive patient or a doubting skeptical person in general. Not everyone is grieving. But unless one has their mind clear and open to the possibility, it will usually be missed.
Today as I am writing this, I received a request from a patient to mail out another blood test form in a patient with a progressive scarring alopecia. The patient's condition is refractory to many treatments. It is progressively difficult to hide the hair loss. Extensive blood tests have been ordered in the past and were normal (as they often are in these particular conditions). "Is this a patient who actually needs more blood tests? or could it be a grieving patient who simply needs our help? "
As a physician, I consider it important to be aware of my patient's response to the physical and emotional changes that come with hair loss and work hard to let go of my own emotional response in order to best help them. It is not always easy to help those patients who are angry at us (we are not hardwired as humans to want to help angry people) but that is indeed what we must do for those who are grieving. It is not easy to support those who do not believe our diagnosis but these patients often need out support as much as (and perhaps even more than) any other patient. I have learned to enjoy the challenges that come with patients who carry significant doubt as they often teach me a great deal about the diagnosis of hair loss.
We must support our patients as they grieve the loss of their hair and the changes they see in the mirror. It's easy to mistake grieving for simply an "angry patient." or a patient who challenges their diagnosis as a "difficult" patient. But recognizing the variety of patterns that come with grieving is important. More studies are needed to understand the emotional and psychological impact of hair loss in men and women.
Kubler Ross. On Grief and Grieving 2007.