Fighting with the Monsters : Saga of an undiagnosed illness
A brief overview of the author battling against an invisible ailment which the doctors couldnât pick up
There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.
ââLaurell K. Hamil
When I was a kid, watching all the fantasy TV shows where magic was the common theme, I would think, what if someone is troubled by something magical which he cannot even discuss with others because nobody else could understand him?
Like, if Harry goes on asking for help from the Muggle Londoners, to save him from the dementors?
The child-me never knew that it doesnât exactly need to be a magic. Anything which is inexplicable and canât be empathized with, unless someone really experiences it on his own, is akin to magic, a dark one.
People often get diagnosed with an illness which is quite troublesome and reduces the quality of life. It is tough to bear with the fact that you would no longer be the same no matter what you do. The idea of a defect, a sickness would always lurk in the back of your mind.
When it happens, the person goes through the stages of grief and eventually accepts his fate. People sympathise and he feels better, he feels accepted. But thatâs not the case always. Sometimes, you may find yourself dealing with something no one has an idea about. And your struggles wonât be conspicuous enough to invite sympathy and compassion from others. You may be left fighting alone, in a strange, cold world where nobody understands you.
Something similar happened to me when I was having a ball of time.
Having cracked the tough medical entrance, I got admission in a marvellous, envy-provoking medical college. Life was good. I was developing skills and making new friends. Then life threw at me a rock so large, I tumbled down all the way to a dark, secluded place. I could see people above enjoying their life and making memories. But they couldnât see me. I, and my struggles, were invisible to them. I was, as if, the only person in the audience of a drama performance, sitting in the dark, visible to none. And everybody in this world was out there on the stage, illuminated with plenty of sodium lamps, for everyone to see.
Been a skinny boy always, it was at the centre of my ambitions to build a nice physique. I started with body weight exercises and initiated gymming. I built muscles and gained 10kg weight in 90 days. I was improving upon myself and my confidence took a jump.
Then, one day, I woke up from sleep and my throat was burning. I didnât feel like having breakfast and my tummy hurt.
A quick consultation got me diagnosed with GERD (Gastro- esophageal reflux disease). It is an illness wherein a valve-like structureâââcalled the sphincterâââseparating the contents of stomach from entering into the food pipe (esophagus), malfunctions. As a result, acid literally comes up the food pipe into the throat and even the nose. It also trickles down into the wind pipe on its way up and initiates a cough reflex. The resulting symptoms are burning pain in the throat and behind the breast bone, cough, sneezing, runny nose etc.
(Image Source: https://en.wikipedia.org/wiki/File:GERD.png)
There exists no medicine to strengthen the sphincter and body does it on its own while the acidic contents of stomach are prevented from regurgitating upwards. Hence, I was put on certain drugs to reduce the acid secretion. A course of antibiotics acting against Helicobacter pylori (a bacteria present in the stomach which increases acid production) was also administered.
But, all vain.
I was somehow not improving and the gastro-enterologists, in their arrogance, dismissed me as a case worth not much attention. Anybody who has suffered from GERD knows that lifestyle changes are important for its cure. Avoiding oily food, caffeine, chocolates, raw tomatoes, raising the head-end of bed to prevent reflux, having smaller and frequent meals are some of the adjustments that need to be done. And if someone fails to improve, a doctor quickly labels him as a lazy lad who didnât put in efforts enough for improvement. I was blamed similarly.
âItâs not that big a disease, stop whiningâ, the doctors would say. Although, in severe cases surgical correction is done but the doctors were against it in my case. According to them, I had a mild GERD.
I got several invasive tests done. A portable camera through a scope was put inside my stomach via the mouth to visualise whatâs wrong. Itâs called an endoscopy. Done three times. Came back normal, every single time.
I got a scope inside my food pipe via my nose for 24 hrs, measuring the amount of acid my food pipe was exposed to. It is called 24 hr pHmetry. The result wasnât significant enough to do a surgery.
Another scope measured the motility of my food pipe to see if it had any intricate problems. It is called esophageal manometry. Again, normal.
I was dejected. And helpless. There wasnât a day passed when my throat wouldnât burn. I was unable to eat or drink anything, and lost 10 kgs weight in one month. My skeletonization was in progress and I felt like being decomposed alive. Nobody had a clue what was going on. I changed innumerable doctors but everyone failed to see beyond the wall of orthodoxy.
During the lockdown phase, it so happened that the acid trickled down into my wind pipe and damaged its inner lining. The latter could no longer act as a barrier against the bacteria and infection followed. I coughed thick greenish-yellow sputum tinged with blood streaks. The cough was so vigorous that my chest hurt whenever I coughed. I wanted to end it all. My helplessness knew no bounds. Being unable to satisfy even the lowest rung of Maslowâs hierarchy of needs, I was very demotivated and low in spirits.
(Image Source: https://simple.wikipedia.org/wiki/File:Maslow%27s_Hierarchy_of_Needs2.svg)
My life seemed to be a free fall without parachute. And the worst part was that nobody could understand my pain. It was not a fracture or a paralysis to be visible. People wondered why I was getting skinnier. Some made fun of my condition, others ignored it. And I continued to suffer.
Once, in my third year of college, the morning of an exam, I broke down. My friend hugged me and assured that whatever comes, we would handle it together. After somehow appearing through the exam in a mentally clouded state, I headed straight to the psychiatry department. Sitting in the shrinkâs chair, I vented my heart out. How I had been suffering from a mysterious illness and nobody had a clue about it. He quickly labelled me a malingerer and dismissed my complaints. That day, I realized that a psychiatrist should get himself evaluated first for a psychological issue before practicing on others.
After struggling for two years, with constant pain in throat and inability to eat beyond a few bites, with me being skinnier than ever, I got introduced to a concept called âmyofascial continuumâ.
A lecture demonstration on You Tube by a physiotherapist Dana Sterling would change my life forever.
She described how our whole body is wrapped around in a tough sheath called fascia which was hitherto supposed to be only a supporting structure with no essential role whatsoever. All our muscles, nerves, blood vessels are wrapped in this layer of connective tissue. In the first year of medical college, while performing dissection, nobody bothers about fascia. It is a structure which is carelessly removed while focusing attention on the neurovascular bundles and the muscles.
But Sterling believes that everything in our body is connected to the other via this fascia and that it has an ability to contract (a big statement as it was long since believed that fascia is a non-contractile structure). Sterling says that when a region of this fascia gets contracted into a tousled mass called a tender/trigger point, a distant point much away from this tender point, feels the stretch. The distant point then manifests as a pathology because the fascial stretch reduces the range of motion of that particular part. To understand it, letâs create a hypothetical scenario. Suppose you are in a group of four and each person holds one corner of a bedsheet without pulling it towards himself such that the bedsheet lies slackened. Now, if one person suddenly pulls the bedsheet towards himself, the other three experience a pulling force which has actually originated from one particular point much away from them. Consider that point as the tender point and the bedsheet as the fascia. A similar stretch is experienced at locations further away from the focus of contraction (tender point) as the fascia is stretched in the body.
So, if your shoulder feels stiff and painful, it could be that the fascia around it is getting stretched because of a tender point, say, in the back. Releasing that tender point by various techniques such as dry needling or cupping, releases the stretch of the fascia at the shoulder and the person improves. Thatâs the concept of myofascial continuum in Physiotherapy. This breakthrough has been a boon for people with chronic pain. Sadly though, many practitioners are yet to be made aware of this phenomenon. Till then, they would keep on prescribing painkillers like candies.
(Image Source: https://en.wikipedia.org/wiki/File:Trigger_Point_Complex.jpg)
Seeing this Life Talk was a âEurekaâ moment for me. I could sense a gravity, a constricting force in my pelvic muscles; which made me suspect this phenomenon at work. But there was a problem, India doesnât have many good Physiotherapists. They are often the ones who, unable to crack a medical entrance, get a bachelor degree in physiotherapy for namesake and sit and perform infrared therapy with machines all day. I was in Pune, and I rummaged through the whole city. I travelled to Jaipur as well but all of them were a disappointment, knowing nothing about the concept. Then I contacted a physiotherapist in the USA, who was very brilliant and clear about the fundamental concepts. Since I was a student and long distance therapy couldnât work, she advised me to search for some physiotherapists nearby in Mumbai.
My stars aligned and I met Dr Leena Daware. She was the first person to initiate some improvements in my illness. But after a while, I reached a standstill. Dr Daware then referred me to a friend of hersâââDr Vivek Kakkar.
He too has a clinic in Mumbai which holistically approaches patients with a birdâs eye view. Although he is a chiropractitioner with favourable views regarding Ayurveda and Homeopathy, his knowledge of alternative medicines couldnât do me any good. After reluctantly experimenting on myself with those pseudoscientific medicines, I tossed his pharmacologic advice right into the dustbin, and focused only on the physiotherapy part. And Iâm glad for that.
As I stood bare-torsoed in front of him, he spotted the problem in an instant.
âYou are breathing wrongâ, he said.
I was breathing with my chest, not my tummy. The abdominal tension in my muscles was visible to him. I wasnât fully using my diaphragm to breathe and hence my pelvis, which had somehow contracted into a tennis ball, refused to relax. What more, I would sometimes subconsciously pause my breath when stressed, physically or mentally. This was a result of my disturbed, tensed-up fascia. The fascia lining my stomach had been pulled upwards, taking along with it the sphincter we discussed. The resulting abnormal location of the gastro-esophageal sphincter disturbed the functionality of it, as in a hiatal hernia, leading to severe acid reflux intractable to medical treatment.
What followed next was a series of visits twice a week. I would travel to and fro between Pune and Mumbai for my physiotherapy. I was taught abdominal breathing â which recruited my diaphragm in a better wayâ , and various abdominal relaxation exercises to release the myofascial trigger points. Thankfully, I improved a lot. Something which seemed to be a nightmare and the toughest conundrum, was yielding before my eyes. It was magic taking its due course.
The struggle was real, though. By the time I would be coming back to college from Mumbai, the gates would be closed and I would have to jump over the walls. It was quite tiring as well. The travel ,the therapy, and the constant effort to study in between as I had to pass my final MBBS exams.
Even after the therapy ended, it was a long process wherein I had to be mindful of the muscle tightness and my breathing patterns. I wish I could say that Iâm perfectly alright now. I wish I could end this fable with a happy ending. But life isnât a Disney World. Even after significant improvements, I have a long way ahead.
Thankfully, I had very supportive friends. Few, but enough. I always preferred quality over quantity, and that helped me during my toughest times. I had, and Iâm still having a tough time dealing with the issue. Looking back, the disease was debilitating enough but more than that was the fact that I wasnât understood.
Maya Angelou has rightly said,
âThere is no greater agony than bearing an untold story inside youâ.
Source:
âFascia & The Mystery of Chronic Painâ by âDana Sterlingâ (https://youtu.be/v54l3wDTJHg?si=KVlH0wSOgb5MQswo)
The Unknown Doctor
