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The psychosocial effects of a chronic, undiagnosed Illness

Michael Harvey is a clinical psychologist who has a private practice in Framingham, Mass. USA

Now 73-years old, Susan recalled when she first noticed the condition that would threaten to define her life and usher in the reactions of countless family members, friends, and physicians.* Thirteen years ago, she noticed slight vaginal itching. “No big deal,” she thought. “I’ll take a warm bath.” But it has become a very big deal: intense itching of the inner labia, mons veneris, groin, ridges where buttocks meet and rectal area. In her words, “The itching devolved into skin red, swollen, oozing, rashy, flaky, lumpy and hardened – depending on location.” She recalled that it was the same year that she was diagnosed with Type II diabetes and reached late menopause.

Since that day, Susan has been examined by 20 doctors, including numerous dermatologists, rheumatologists, allergists, infectious disease specialists, immunologists, vulva specialists, and gynecologists. The outcome was only a long list of rule-outs: staphylococcal infection, yeast infection, morganella morganii, yeast infection, psoriasis, herpes, streptococcus, and other kinds of bacterial growth. Abdominal CAT scan and abdominal ultrasound were done. She tested positive for lichen planus which was described to her as a “mysterious skin disease without known causation of treatment.” Not helpful. Also not helpful were non-specific, generic diagnoses such as spongiotic perivascular dermatitis or eczematous dermatitis. She has been patch tested three times over the years. The tests indicated allergens to all fragrances, rubber, citrus, tomato, elastic and blue dye. However, eliminating these allergens did not result in any relief.

The outcome was only a long list of rule-outs: staphylococcal infection, yeast infection, morganella morganii, yeast infection, psoriasis, herpes, streptococcus, and other kinds of bacterial growth.

She has been prescribed a slew of medications: Diflucan, Acyclovir, Methotrexate, Bactrim, Cefadroxil, Doxycycline, Ciprofloxacin, multiple trials of Prednisone, injectable Dupixent, and 10 different topicals. She received ultraviolet treatment for six months. Two additional medications were recommended (Rinvoq (upadacitinim) and Obzelura (ruxolitinib)) but the dire box warnings terrified her. Currently, she is awaiting funding from the Patient Assistance Program for a trial of Skyrizi (risankizumabl-rzsa).

I asked Susan how her condition affects her quality of life and what name she has for it. She replied, “It’s all consuming, as it’s widespread on both front and back and sitting, standing, bending and walking are all very painful. When it’s very bad, I use an ice bag or compress and recently I’ve used gel at work, hidden under a towel at my seat. It takes about 30 minutes to calm things down. The itching often wakes me at night and it’s so intense that I feel woozy from it – not lightheaded or faint, just very unsteady. It takes over my whole body. My condition is named, but not diagnosed. I call it a skin issue.”

The function of a diagnosis is more than to guide treatment planning. It often provides emotional relief for patients, even if the diagnosis is dire. As Susan put it, “I keep hoping that some doctor will tell me exactly what this ‘skin issue’ is, even if there’s no cure.” At first glance, this is puzzling. One patient, a Viet Nam veteran, who had terminal cancer, provided a clue: “The inability to understand the enemy was ‘the basic error’ in the conduct of the war in Vietnam.” Another patient, a Star Trek fan, was relieved to finally learn he had Ebola Hemorrhagic Fever: “Not having a diagnosis is like the Klingon cloaking device which renders the enemy invisible. If you can’t see it (aka diagnose it), it becomes more dangerous.”

Viet Nam and Star Trek, notwithstanding, this phenomenon can be described psychologically. The term “spread” is used to describe when a person views a disorder as defining unrelated functions.1 For example, “I’m deaf, therefore I’m generally inadequate” or “I have diabetes, therefore I’m undesirable.” A definitive diagnosis circumscribes the condition, puts boundaries around it so it doesn’t spread and define one’s identity.

As Susan put it, “It would be comforting to me to know exactly what this so-called “dermatological condition” is. Even if it’s with me forever, at least it would be less mysterious, less ambiguous. I can’t begin to tell you how I’m barraged by my family and friends with their endless advice.” Susan’s undiagnosed condition functioned as a Rorschach Inkblot on which members of her social network perceived their version of her problem and cure. For example:

• “Blame (‘What did you do to cause…?’)
• “Prying for personal details (‘What does it look like?’)
• “Comparisons to other persons’ conditions (‘I know someone who has …’)
• “Suggestions for remedies (‘You should try eastern medicine, topicals, vitamins.’) and
• “Questioning my availability due to limitations (‘I didn’t ask you to join me because of your skin problem.’)”

The function of a diagnosis is more than to guide treatment planning. It often provides emotional relief for patients, even if the diagnosis is dire.

Susan’s skin issue had become the primary topic of social conversation and, in many cases, the only topic. At first, she was appreciative. Perhaps she did somehow cause her skin issue and she knew many people who claimed their illnesses were cured by alternative treatments. However, that conversational topic quickly morphed into becoming interpersonally toxic. She recalled when her husband lectured her about various skin remedies after she had screeched in pain during sexual foreplay.

Not only do Susan’s family and friends suggest ways to cure her skin issues, so have her physicians. (It’s their job). I asked Susan to elaborate about her medical care. “Typically, each doc had one or two ideas about how to help me, but inevitably bids me goodbye when the treatment doesn’t work. It reminded me of a slang medical term – ‘diagnose and adios.’”

“But if their treatment is unsuccessful, wouldn’t it make sense that they discontinue it?” I responded.

“I’m not saying they should have continued treatment if it wasn’t helping. But it was their manner. I got the feeling that they really didn’t give a sh*t. about me, even feeling happy to see me go.” Then Susan recounted instances in her care that continue to haunt her:

• “Being told ‘You flunked that medication trial.’
• “Visting doctors included a trauma specialist from the Iraqi war and most bizarrely, a college freshman contemplating medical school!
• “No mention of possible effects on physical intimacy with spouse. I wondered why everyone was afraid to state this.”
• “Numerous doctors gasped when they first saw the site.
• “Being told ‘I’ve never seen this before.’
• “I felt like a freak at a circus when I was featured at Grand Rounds at two hospitals.
• “Being told I’m the ‘N of 1’ felt dehumanizing.
• “My infection site referred to as a ‘baboon butt’ – a medical terminology.
• “No offer of pain management (not even Advil) and

A caveat: I am not suggesting that the above criticisms by Susan necessarily indicate that the physician acted inappropriately. These bulleted reports lack context. As examples, in the context of a positive doctor-patient relationship, a comment that “‘You flunked that medication trial” or “You’re the ‘N of 1” may have been experienced by Susan as humorous respite. And she may have appreciated that being featured at two grand rounds reflected her doctor’s dedication to finding a cure. The important point is that Susan’s list of complaints occurred in the context of a negative doctor-patient relationship and therefore caused her extreme emotional distress.

I asked Susan to write an imaginary letter to all her doctors that she may never send. This is a common ritual to help adults recover from trauma.2 This is an excerpt:

“Dear all my doctors – 2012 to present,

“The “journey” as some doctors seem to like to call it, has been traumatic, both in physical manifestations and in stress, outrage, and loss of privacy and dignity along the way. A general comment is your lack of connection about ME- that is, at least acknowledgement that this disease has affected my daily activities, relationships, ability to work, and financial strain, to name a few.

“Secondly, there has been no interface with other doctors who may be relevant to the skin issue. For instance, if one thinks of allergy, one thinks of immune system issues, but there was no outreach from any doctor to the immunologist I regularly see.

“This speaks to a lack of consideration of the total picture and the total patient. I suspect that this was not just in reaction to me but is the way each of you and the medical community view and treat those you see. I blame, in part, the medical training you’ve received- that is where this approach may begin. If you see yourself as a technician with the task of solving a problem, then you would see no need to look beyond the examination, tests, and trials of treatment.

“Had you somehow acknowledged ME, then my “journey” wouldn’t have been as traumatic, even if you couldn’t effect a cure.”

How can we make sense of Susan’s stark indictments of her care? Does she have a psychiatric disorder which is consistent with so-called “doctor bashing?” Is she a “help-rejecting complainer” – one who complains to seek help and support, but then rejects any help that’s offered? Susan’s history and psychological makeup are unremarkable for any of these behaviors. She is well adjusted and highly intelligent with a doctorate degree.

The contagion effect of an undiagnosed/untreatable illness extends beyond the patient to one’s social/professional networks, including physicians who have attempted to help her. The term “moral distress” has been used to describe the feelings of guilt, sadness and defeat felt by health care professionals when we know what our patients need but can’t provide it.3

It’s supposed to go like this: if we render the proper diagnosis and prescribe the proper treatment, we will have a successful outcome. A done deal. However, when that algorithm falters, there is an inevitable letdown, what has been termed the cost of caring.4 As one physician put it, “I wanted to feel excited and intrigued at the challenge of treating a patient’s illness. That’s what I trained for in med school! But instead, I found myself feeling defeated, inept, angry, and helpless that I couldn’t help this poor patient.”

Whereas Susan felt dehumanized her doctors, they, too, are also at risk for feeling increasingly dehumanized by what has been described as an inhumane healthcare system3 with litigious minefields at every corner.5 A recent survey showed an alarming increase in physician burnout, with 62.8% of respondents reporting at least one symptom in 2021 compared to just 38.2% in 2020.6 Burnout is characterized by depersonalization, loss of enthusiasm for the profession, and cynicism. It adversely impacts physicians’ personal and professional lives, with potentially catastrophic consequences for the patients in their care.7

It’s supposed to go like this: if we render the proper diagnosis and prescribe the proper treatment, we will have a successful outcome. A done deal.

As health-care providers, we are not immune to internalizing our patients’ suffering. Insidiously, we may erect a shield of protective armor, beyond what is necessary to maintain healthy boundaries. Our fervor and dedication for treating patients who present with complex disorders are replaced by routinized behavior. Figley described this as compassion fatigue.4 This dynamic helps explain why although Susan experienced her doctors as competent, she also found them to lack compassion.

Susan’s reflection that “I constantly felt like I was helplessly sinking with nothing to hold on to” is also what I frequently hear from physicians. Burdened – weighed down — by what may be called a chronically ill healthcare system without a clear diagnosis, it becomes difficult to tolerate the “weight” of compassion for a patient’s suffering.

There is no simple solution to this multi-level quagmire. However, a coping strategy that Susan uses may be applicable for many physicians. Her mantra: “I am more than my skin issue. This is why I work, see friends, cook, read, etc. I need to make sure that this illness doesn’t define me.” In this manner, she can garner the energy to persistently seek medical treatment because she doesn’t put all her “identity eggs” in the skin issue basket. She diversifies her “identity portfolio.”

In this regard, I am reminded of my former primary care physician, a gifted clincian who had bottomless passion for his career. In his examining room, he had a meticulously hung collection of antique tools: an old vintage crank hand drill, several hand planes, fine chisels, and carving tools, etc. He would sometimes point them out during our visits. I would imagine that after a frustrating day, perhaps with difficult patients or insurance snafus, he would examine his tool collection and feel a sense of pride. Like Susan, he diversified his identity portfolio. He reminded himself that there’s a person connected to his stethoscope. Stated differently, because he took steps to prevent himself from feeling dehumanized, he could resist dehumanizing his patients. He could enjoy the gratification and incur the emotional costs of forming positive, compassionate relationships with people who sought his help, including those with challenging, undiagnosed disorders.

*Deputy editor’s note: All references to patients are anonymised. Evidence of patient consent has been provided and shown to the BJGP team.

References

  1. Wright, B. A. (1983). Physical disability: A psychosocial approach, 3-rd edition.. New York: Addison Wesley.
  2. Bass, E. & Davis, L. (1988). The courage to heal: a guide for women survivors of child sexual abuse. New York: Harper and Row.
  3. Doggett, L. (2023). Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis. New York: Simon & Schuster.
    El-Aswad, N., Ghossoub, Z., & Nadler, R. (2017). Physician burnout: an emotionally malignant disease. CreateSpace Independent Publishing Platform.
  4. Figley, C. R. (1995). Compassion fatigue: Coping with secondary traumatic stress disorder. New York, NY: Brunner/Mazel.
  5. O’Dowd, A. (2015) Doctors increasingly practise “defensive” medicine for fear of litigation, says regulator. British Medical Journal, 35:h87.
  6. Shanafelt, T.D., West, C.P., Dyrbye, L.N., Trockel, M., Tuffy, M., Wang, H., Carlasare, L.E., & Sinsky, C. (2022). Changes in burnout and satisfaction with work-life integration in physicians during the first 2 years of the COVID-19 pandemic. Malo Clinical Proceedings, December: 97(12), 2248-2258.
  7. Shanafelt, T.D., Dyrbye, L.N., & West, C.P. (2017). Addressing physician burnout: the way forward. Journal of the American Medical Association. 317(9), 901-902.

Featured image: by Krystian Tambur on Unsplash

The BJGP is the world-leading primary care journal. At BJGP Life we add multi-media comment and opinion for the primary care community.

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