Confessions of the chronic chic: What it’s like living with chronic illness and invisible disability

by - November 17, 2018

Not all disabilities are visible.

Life with chronic illness is unimaginably challenging - it’s stressful and has the potential to pull away every shred of hope and strength you have in every aspect of your life. It has the capacity to rob you of the important things, and most of the time including your sanity. It drains you of every positive thought in your head, forcing you to believe that you’re this little piece of scum that has no value or meaning at all.

I should know. I’m living this kind of life.

Around this time of the year not more than six years ago, I was told I have myasthenia gravis. I could only imagine the blank stare I gave the doctor because one, I didn’t know what it was and two, that called for the question I so dreaded to ask.

Is it curable?

It took her some seconds before the doctor answered me back. It is treatable, yes.

You see, myasthenia gravis is an autoimmune, neuromuscular disease that causes severe muscle weakness. When I say severe muscle weakness, it means I wouldn’t be able brush my hair and my teeth. My eyes would either be droopy or seeing double, or both. I wouldn’t be able to chew and swallow food. Or put my clothes on without help. I wouldn’t be able to walk up and down the stairs, or go to the bathroom and sit on the toilet. Hell, I wouldn’t even be able to smile and take a good selfie. On worst days, I would have to be rushed to the emergency because my breathing muscles are already affected and I wouldn’t be able to breathe. It’s a rare condition, so just imagine living with something that people would perceive to be just all in your head. Plus, there is no known cure, but like the doctor said, it is treatable, which means I need to take medications for a long time, to alleviate the symptoms. Maybe for the rest of my life.

Right now, I am living an almost normal life. I don’t even look like I’m sick, maybe except for my unusual chubby cheeks brought about by the immunosuppressants. I must say that I’ve come a long way in accepting the terms of this new life I had no choice but to sign up for. It was never easy, but I’ve learned a lot of things:

“It’ll get better, you’ll see” is a myth. Maybe I just got lucky that life got better, but it isn’t the same for everyone. I’ve been into different support groups and it allowed me to witness people who could only hope and pray for that day when they’re finally symptom-free. Most of them have been called home without any relief at all. And it’s sad, really. I guess, getting better got a whole new different meaning for me. Getting better now meant coming to terms of accepting it, that chronic illness doesn’t just go away, and I just have to be strong and always remember that I am not alone. I am not the only one fighting this battle.

People are mean, and it’s tiring to explain yourself. I always get stares whenever I stand in the priority lane. People would look at me from head to toe, assessing what’s wrong with me, given that still have both limbs and could walk properly. I could only stare straight ahead, ignoring theirs and console myself that their idiocy isn’t visible either (can’t we just be nice to everyone?). Sometimes I’d think I don’t need to explain anything to these people, but when a stranger asks, I just think of it as an opportunity for spreading awareness. I just pray to heavens my mouth muscles would cooperate.

An effective support system is hard to come by. Again, maybe I was just lucky enough to have a family that’s willing to understand what I’m going through. I found an amazing doctor that was able to manage my symptoms so well I feel like I’m already in remission. I’ve got witty friends who could make jokes and make me laugh about my condition. People that hit my phone up whenever I fall off  the radar just to check if maybe I was in an emergency situation again. But let me tell you that there’s a great pain involved in determining the people with genuine concern as opposed to those who only want something to talk about.

It is depressing, and there’s only so much you can do about it. I used to have a great life - I have an exciting career, I can go to places whenever I want without considering if there’s a nearby hospital over there, I can talk to people without worrying about embarrassing myself once my bulbar muscles failed me. But things have changed, and chronic illness has effectively stolen the self-confidence I used to rely on to steal great opportunities. Looking back, I would like to believe I earned every right to sulk in the corner, launch a one-person (or maybe three) pity party and be depressed. Do I have any other choice? Definitely. And that is, to cry in my pajamas overnight, wake up in the morning, get dressed and put my makeup on because queen’s got work to do. It’s hard, super hard, but I figured if I wanted to be better then I just have to shrug everything off my shoulders.

My resilience and tolerance to pain gets better, it only made me stronger. And yes, battling chronic illness has made stronger. It has effectively set my mind that, what else can I not surpass after this? The things I encounter in my everyday life has become too trivial I could just laugh at them. I no longer mind being rejected (at least not like before, hah!) because of how many times I have been rejected by institutions that would supposedly provide me with medical assistance. I no longer mind being alone because of the number of days I spent in the ICU room all by myself, with only the equipments-I don’t-know-what-they’re-called and their eerie beeps to keep me company. It no longer mattered if I got wounded and scratched, because I have been under knife and stitches (and it won’t matter if I would fall in love with the wrong person because, how many times have I fallen off the stairs just because my leg muscles won’t cooperate? 😂).

My relationship with God has taken a whole new level. I understand that not all of those who would read this would agree about the higher power. But I believe in God, and I even asked Him what are His plans for me while I was intubated some years ago, struggling to survive. There were too many questions, and I found the answers along the way. I figured I was never rejected - it was a prep for me so I’d be ready to face the amazing things that awaited me in this other, much brighter side of life. Kinda like a training for that new job you just landed. I find solace in talking to God in my waking hours at night, because I know someone is listening. And He’s always there. He won’t tell anyone what I told him (He won’t screenshot what we talked about, duh!). He won’t cheat. Best of all, God won’t leave.

All of us have our own life struggles. Sometimes it would feel like the world goes blacker and blacker each day you wake up, but when you choose to still try to deal with it, then that’s saying something. And it doesn’t matter how severe or big the battle had been. What we’ve learned along the way would be our determining factor for that. And in the end, we’d just look back and smile and say, “Whew! I made it!”

xo, Beth G.

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