Of Illness and Experience

MS: Silent, Invisible, Chronic Disease

An Introduction
Disseminated Sclerosis, Encephalomyelitis Disseminata, Multiple Sclerosis-MS

MS is known by many names but not by a lot of people. A disease that is considered relatively rare as it only affects more than 2.5 million people across the globe.

More than 2.5 people living with a potentially disabling disease. So what is MS?

Multiple Sclerosis is an example of a demyelinating autoimmune disease that affects the central nervous system (CNS). Sclerosis defines the sclera or plaques and lesions that are found in the CNS region. Science talks aside, it is a hard illness to bear. A debilitating disease that can’t be seen by the naked eye. The simple symptoms you may experience day to day that you believe is caused by the weather, stress, and exhaustion may be symptoms of an illness you know nothing of.

That was the problem for me.

Half of my childhood was spent in the hospital. Alcohol to this day remains a distinctive part of my scent. Needles don’t scare me, nor do the usual stories about hospital mishaps. I was lax about it, too chill to even cry. Those days ended seven years ago. I was diagnosed with Mitral Valve Prolapse Syndrome (MVP) a month before the doctors found out I had Multiple Sclerosis.

I did not even know of this disease, not an inkling. The flaw of the educational system is that it remains repetitive and learning rarely informs us about chronic diseases. I won’t even know that Cancer and Diabetes are forms of chronic illnesses if I did not research about it. Chronic illnesses were a mystery until I found out I had it. It was the simple things at first that enabled me to ignore it for a long time.

I am sickly and the symptoms matched the ones that already existed. Asthma made it hard for me to do strenuous activities. With MVP, I was always fatigued and had tingling sensations. Dizziness caused me to lose balance here and there along with fainting spells. I also suffer from Astigmatism so my vision being blurry wasn’t as alarming as it used to be as it was when I was young.

Then BOOM! It happened

I fainted in class and had to be admitted to the hospital. We all thought it was because of my newly diagnosed condition. It wasn’t.

The day it manifested in full force, I was left alone for a while in my room as my mother had to take care of some papers for my release. Restless and thirsty, I tried to stand up to get my favorite yogurt drink, Dutch Mill, from the shelf that was only a meter away from me. When I tried to stand up, I immediately landed on the floor and the nurse found me in that awkward frog condition. I couldn’t feel my legs and a neurologist was called. After a few tests, including Magnetic Resonance Imaging (MRI) and Electromyogram and Nerve Conduction Study (EMG-NCV), I was diagnosed with Multiple Sclerosis.

It was already in the middle stages when they found out about it. I never regained the same sensation or strength on my lower extremities. That was how silent that disease is. It made me question every symptom in the past. Headaches, who doesn’t get them? Dizziness was already a prime factor with MVP and cramps were just a common occurrence that I assumed I was going to be fine. Being fine is now a foreign occasion.

When I came back, people questioned about why I was held in the hospital for so long. There was also the information about me being quarantined and it made them fear that I had a contagious disease. It was then that I tried to explain about Multiple Sclerosis. That also led to me trying to explain chronic illnesses but people already had ideas of what I was suffering from.

One is lack of faith and the other is pretending I’m ill.

I’d give them credit for knowing I didn’t look ill. It’s a double meaning comment as I’d like to think I look fly but the downside is I know they don’t believe I actually have an illness as if it’s so easy to invent one. I went to school with a cane, an obvious double chin, looking haggard, tired and always shaking, how am I not ill? Because I got better and that’s against the unspoken rule of disabilities as a straight path to being at your worst without a pause. People often assume and rely on physical traits with their own mental lists on what you have to show for them to consider you disabled. I got rid of the cane because of therapy but it just wasn’t a good explanation that they do not accept it. As if their acceptance can change the diagnosis.

That’s not how it works!

In a religion-heavy country, the existence of my illness and its symptoms being invisible provokes skepticism and dismissal. The automatic comforting words, that don’t even comfort me at all, are “pray and it will disappear”. They take it as a testament of faith and challenge instead of looking at it just as it is, an illness. Leprosy dates back to Bible times and some people weren’t cured by prayers back then. What makes my disease curable by faith now? There were times when they called a bunch of healers who tried to diagnose me. They did that with rituals, candles and slapping me with palm leaves. The common diagnosis was that I have a demon that was latched with my soul. At some point, it elevated to me being the demon.

It was a challenge, navigating myself away from stereotyping and accepting that. At the end of the day, it’s no one’s fault.

MS does not work the way people want it to be. The naked eye can’t see cells and internal organs without the help of technology. Is there truly a need to witness physical manifestations? Symptoms that are not visible can’t be concluded as nonexistent. The distress often visible on my face is not a product of my imagination but of the slicing sensations going up and down my spine. That is chronic pain. The laziness people often accuse me of not being able to reach my highest potential is me not having any energy to even stand up to take a bath and unable to concentrate due to feeling drained.

People have asked me continuously why I live this way and what the benefits are.

It is not about trying to take advantage of people by pretending to be ill and neither is it for privileges. We lack them all the time! I do not benefit from it in any way, it has hindered me from doing some of the things I used to love. Before telling me to fight for my dreams, I miss watching fast-paced movies and trees with blinking lights. I have epilepsy, I can’t do that. It’s not pretentious or a chosen way of living. You just have to live with it to the best of your abilities by taking advantage of the good days. To know and accept limitations instead of pushing yourself too hard you land in a hospital.

In what way is it silent and invisible?

It is silent in a way that you only know something’s wrong when you feel some symptoms, it’s something that catches patients off-guard. The body can’t make an alarm system to alert people the way they want to, no white noise or anything. When attacks occur, some just find us on the floor and they’d still wonder what’s going on. To know what it is, they need machines to test and confirm. That is how chronic illnesses work. One doesn’t look different but they are feeling symptoms that you can’t feel yourself and sometimes, even they won’t know what goes on inside their body. A long period with no symptoms seen or felt can come to an abrupt end when it manifests again. An everchanging pattern that you just have to deal with.

At the end of the day, MS is a chronic disease and it is there for life. It is time for people to accept that instead of challenging it.

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