Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

January 17, 2016

Continuing Medical Education (CME) in Humility and Healing

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings.” ― Helen Keller
My thoughts related to my invisible illness often revolve around whether invisibility borders on inconsequentiality. While I feel sad that I did not receive help for my illness for decades, I also realize there is not much else the doctors could have done. Some diseases among the thousands of diseases are simply not prevalent enough, not known well enough, not covered enough in medical textbooks, or not easily diagnosed. My illness is actually not rare and it is reasonably prevalent, but it is not covered in textbooks and it hides in plain sight leading to missed diagnoses.

I remember the silent imploring that echoed within me, that pleaded for someone to see what I could feel in my bones (literally!) - there was something wrong with me. Far more wrong than what could be accounted for by "lifestyle factors". I complete related to Agatha's (one of the precogs in the movie Minority Report) anguish in her lonely knowledge of a distressing reality, albeit obfuscated, based on a painful vision that no one else could see, and ultimately, her powerlessness to do anything about it.

Whenever I wonder why I was not diagnosed by the specialists when my condition is easily diagnosed (if you look for it) and is not rare, I also question myself whether it would have been alright to not get a diagnosis and keep on suffering if I had a rare or difficult-to-diagnose disease? What is it that would have made it okay?

I have come to the conclusion that the answer lies in the effort one puts in to try to diagnose. No one seemed to believe or take me seriously when I was in so much pain, for the simple reason because there seemed to be no reason for so much pain and therefore the pain did not exist. No one examined me thoroughly. The answer lies in believing the "difficult patients" that they are indeed suffering from their symptoms. Even when there is no cure, a person deserves to be heard and seen.
“The opposite of love is not hate, it's indifference. The opposite of art is not ugliness, it's indifference. The opposite of faith is not heresy, it's indifference. And the opposite of life is not death, it's indifference.”  ― Elie Wiesel 
With that spirit, I signed the petition at change.org for inclusion of invisible illness in medical curricula. The petition says:
Hypothesis: Patient Quality of Life, and morbidity/mortality rates (especially due to suicide) should decrease with a compassionate, common-sense plan to identifying and treating "Invisible Illnesses" through formal physician education.
"Invisible Illnesses" and symptoms include, but are not limited to: traumatic brain injury with diabetes insipidus, dysautonomia, postural orthostatic tachycardia syndrome, mitral valve prolapse syndrome, pure autonomic failure, Chiari malformation, Multiple Chemical Sensitivities, systemic lupus erythematous, Lymes disease, dementia, Ehlers-Danlos Syndrome, sickle cell anemia, chronic fatigue syndrome, vertebral artery dissection with/without aneurysm, migraine headache, oculo-vestibular dysfunction, and hypoperfusion of the brainstem.
Many of us are bed-bound, home-bound, invisible to society, lost and forgotten. It is time for us to speak out and be counted. In advance, thank you for your serious consideration to the problem and to the proposed solution, for which a precedent has already been set by Pain Management. 
The comments section of the petition documents the sad experiences of patients and the pain caused by doctors trivializing their symptoms and dismissing them without really trying hard to get to the bottom of things. I cannot hold lack of knowledge (reasonable) or a lack of hard work against doctors. However, I do think the testimonials tell the story of apathy suffered at the hands of those who are supposed to heal and help.

Doctors must work under immense pressures of work load, emotional stress and personal sacrifices to do what they do. I do not know if it would be feasible to include illnesses that qualify as invisible for a separate course  - the list would be too vast and many of the diseases are actually covered somewhere or the other in the textbooks. And common sense dictates that the more prevalent diseases are bigger priorities to learn and remember than something that is extremely rare, especially for non-specialty graduates or GPs. However, a diagnostically challenging disease (including invisible diseases) does not mean it is rare.

“What the eye doesn't see and the mind doesn't know, doesn't exist.” ― D.H. Lawrence

So I personally think the important thing here is to make humility an ingredient in clinical teaching. Our teaching professors and consultants are dynamic, Littmann® or scalpel wielding larger-than-life healer-magicians, who are radiant with their confidence, knowledge and efficiency. It is often not the priority to teach medical students that there are millions of people amid us, who have access to excellent healthcare and yet suffer from undiagnosed and invisible illnesses, and invisible disabilities. Failures and failings are not part of the curricula. Our minds become limited by the arrogance of knowledge - we cannot see many possibilities if we don't have humility and an awareness of our ignorance. If one is humbled by the responsibility of having to soothe a person in their most painful and vulnerable moment, then compassion will flow naturally.

Science does not have all the answers. Pills cannot cure all pains. Medicine is more than the science of curing diseases, it is also the art of healing and ameliorating suffering. Just because clinical examination and diagnostic tests do not suggest anything wrong does not mean the person is not sick. Believe the patient. Do not label the patient as "hypochondriac", "sick role player", "psychosomatic" or "difficult" just because you cannot find a cause for their symptoms. Try to listen. While it is alright to devote only the allotted minutes to most routine patients, there are some who are suffering more physically and mentally (even if because of lack of diagnosis) and they do need a little more of your time - after all, time is all that you have to offer - you may not always be able to offer a cure or even relief.