From the horrible physical symptoms to the worrisome psychological torture, chronic illness patients are in a constant state of battle. Day in and day out, we are fighting an invisible war with our bodies. Some days, the pain is unbearable — even the pain killers don’t help. On other days, we are taxed by psychological troubles. One of them is grief. Like the pain, grief can come and go, stay with you for hours or cause a breakdown.
Losing a person close to you hurts. You grieve the death and move on after a few days. But what if, the person you lost is you? Your old self, full of enthusiasm for your career, your goals and your future. What happens when you see yourself breaking down over a period of months, seeing your life going nowhere, and everything coming to a halt. One diagnosis and all is lost — just like that. What happens when the person you lost is you?
It was 2016 when I was preparing for competitive exams, and acing my tests. That August, I was hit by a jolt of pain — the kind that’d make you scream. The days turned into weeks, weeks into months, and it was November by the time I was correctly diagnosed. By then, I was already missing my important classes and bed-ridden (thanks to the nine tablets I was taking each day). In the following months, I saw my life fall apart. My then goals were out of reach, I had no idea what I was going to do (career-wise) and all my energy was focused on (somehow, just somehow, for once) getting rid of the pain attacks.
It’s been five years. I still grieve the life I have lost. I grieve my healthy life that I lived before a monster named Trigeminal Neuralgia came into my life. I grieve over the abilities I took for granted, like the ability to eat, work and even think. I can’t perform a single activity now without fearing the presence of the next pain attack. I grieve my old self.
Grief has its own stages
Denial and Anger: I denied the diagnosis. How could a healthy, sporty person like me get chronically ill? It was all there in the MRI and CT scan reports but I wasn’t ready to believe what I saw. It was right in front of my eyes but I chose to not believe it.
I was already angry with the doctors (I was on medication for a wrong disease for the first three months but that’s a story for some other day). And now, I was like, “how could you do this to me?” I still don’t know what did I do to be diagnosed with an extremely painful and rare chronic illness that is supposedly mostly found in 60+ year-old females. I was 19!
Depression: Chronic illness can be a lonely place to be in. You don’t only have to deal with the symptoms but also the side effects of the 10 kinds of medicines you take daily. As a result, you are left fatigued, have brain fog, and can hardly get out of bed. My friends were getting into their dream colleges, dating the people they liked — they were out celebrating/ And the 19-y.o.me was sleeping 18 hours a day. If you spend that much time in bed, you are likely to not get any work done or meet anyone.
It is hard for others to understand the challenges we face, the limitations we have and our ill-health in general. When my health deteriorated, the number of friends I could rely on dwindled to just a precious few. As they say, “it’s amazing how chronic illness turns friends into strangers and strangers into friends.” Formerly dear friends disappeared as I became increasingly unable to keep up with them in life.
Imagine a person in his late teenage life spending all day in bed by himself. Of course, you’d be lonely with your thoughts — thoughts that break you, those which are not your friends. My confidence and self-worth took a big knock. Day in and day out, I used to think “what’s the point in going on?”
Acceptance: As I have written before, acceptance is a verb. It is an active process. I had to come to terms with the fact that at 19, illness barged through my door and changed my life forever. I still get overwhelmed with pain attacks. I still take six tablets a day to function. But acceptance releases you from the obligation to fight with your body. I was more peaceful when I accepted what had happened instead of constantly fighting to change things.
However, grief is a constant with chronic illness. You can move between the processes. Acceptance doesn’t guarantee that you’ll not be depressed or angry. After all, you can take all the prescribed medications, submit yourself to all kinds of treatments, see all the experts, eat all the right food, and still be sick. However, you will learn to appreciate the less-pain days you have because you have been broken and hurting for so long.
My advice? Be kind to yourself. If your body demands rest, let it. If you have to cancel plans, do it. You do not owe anybody your time or your efforts. Grief can still hit you out of nowhere. This is the time when you need to remind yourself how far you have come. Take care.