How To Treat A Disease That Has No Cure

“I have generalized itching,” said Kamlesh (name changed), a 35-year-old lady from Delhi. “I am not able to sleep all night. It itches a lot. I got treatment from here last time. The itching improved slightly but since February it has become worse.”

Being the body mechanic that I am expected to be, I asked her the regular questions - is there a lesion where it itches? Are the axilla and groin affected? Does it worsen in summer? She answered, “Yes!” to all the questions. This is obviously Tinea (a fungal infection), I thought to myself. But why should she have the tinea infection? She had no usual risk factors- she was not a diabetic, and said she maintained proper hygiene. She was overweight but not morbidly obese. 

Her next complaint pointed me in another direction. She added that she also feels tired all the time, and gets breathless when she walks some distance. On further queries, she told me that she also had low bleeding during her menstrual cycles. “Do you feel sad without any reason?” I asked. I could see the pain in her eyes as she quietly nodded. “ANEMIA!” my brain exclaimed. Anemia can be associated with recurrent infections, low bleeding during menstrual cycles, and low mood. I was nearing the answer to my favorite question - why should somebody have a disease?

I put my body-mechanic brain to work and asked more questions - do you have a craving for mud or ice? Do you get a tingling sensation in your legs and the urge to keep moving them? She answered yes to both questions. I had the eureka moment - “IRON DEFICIENCY ANEMIA!”  

The picture was nearing completion - or so I thought. She had iron deficiency, which led to anemia, impacting her immunity and thus causing a recurrent fungal infection which was not resolving- since nobody was treating the underlying cause of iron deficiency. I gave myself an imaginary pat on the back and then returned to ask my last set of questions to figure out why she was having iron deficiency.

“How many children do you have?” I asked next. Having seen a lot of mothers who delivered multiple children at home without antenatal care (Yes! Even now!) with anemia, this is usually my first question.

“I am not married.”

She had been looking quite distressed all this while. I assumed it was due to the itch and the disturbed sleep that it was causing. I put my body-mechanic hat down and took a different approach to treating her. 

“My mother is bedbound. She is 65 years old and has paralysis,” she said. “Her weight is more than 100 kg and she has cataracts in both eyes. She can not even see the food she eats. I have to do everything for her, right from bathing and feeding her to cleaning her when she soils the bed. I have to be next to her all day so she doesn’t fall off the bed. Today I asked my brother to stay with her for a while so I could come to get medicine for myself. I feel very tired.” I sat quietly as she tried to hide her tears. 

“I want to work and get a job but I can not leave my mother alone. I am dependent on my brother for everything. My sister-in-law wants to move out and live separately.” She let her guard down and started to cry. I guess she felt she could trust me now. How long she had contained her emotions, I wondered.

“I was married at 16 years of age. My husband was an unemployed alcoholic. I divorced him after 6 months of marriage. My mother got a paralysis attack because of the shock of my marriage ending. I have been fighting the court case of the divorce ever since. He (ex-husband) passed away this February.” 

The iron deficiency anemia was a possible explanation for her illness. But the mental, physical, and social stress she was going through was staring me in the face. Psychological stress makes a person more prone to skin diseases. The stress of her personal life and the caregiver fatigue she was going through were the root causes of her illness. There is ample evidence to show that most caregivers are women and more women sacrifice their needs and wants to take care of others. Women are also known to tolerate illnesses till they become unbearable. Couple these two and one will find why Kamlesh’s disease was not under control. 

She was not able to get proper treatment for the disease and was struggling with the fatigue and stress of taking care of a bed-bound mother alone with no social support. “Who takes care of you?” I asked her, partly knowing her answer already. 

I put my body mechanic hat back on, but only partially this time. Could I possibly cure her? I repeated the words of my mentor in my head - “There is a reason it is called healthCARE.”  As doctors, are we blinded by our quest to search for a cure for our patient’s diseases? How often do we see the person who is suffering and not the “case” of the disease? We might understand our diseases really well but do we make the effort to understand the person suffering from them? 

As early as our undergraduate days, medical practitioners are often advised to practice clinical detachment, to look at our patients and their complaints through a sterilized perspective. It helps us stay objective and professional in the face of abject human suffering, which is often beyond our control. Suffering has several dimensions, and all roads- poverty, sexism, casteism, lack of access- lead back to health. However, can we really cure any disease without alleviating the several precipitating factors, which lurk beyond the reach of our OPDs and wards? In the absence of a complete cure, what is stopping us from at least caring?

Besides writing the most evidence-backed prescription for her, I also prescribed her my phone number. Was I making a mistake? After all, doctors are not supposed to emotionally connect with their patients. But the smile she had on her face while leaving the clinic said otherwise.

Edited by Radhikaa Sharma.

Image by Janvi Bokoliya.