Living with an invisible illness – what we are missing (Part 1)

An invisible illness is a term used for any medical condition that isn’t noticeable to others. This includes chronic disease conditions such as autoimmune diseases (lupus, rheumatoid arthritis), diabetes, fibromyalgia and also mental illnesses.

Invisible chronic illnesses significantly impair normal activities of daily living.  96percent of people with chronic medical conditions show no outward signs of their illness, 10percent experience symptoms that are considered disabling and 73percent of people who live with a severe disability do not use devices like a wheelchair. So most people would not consider them as disabled, unlike diseases that are visible.

Those with invisible illnesses often face a lack of social awareness, stigma about their conditions. They are perceived as exaggerating their symptoms, face more skepticism about their being ill, and are accused of being just lazy or moody while disease wreaks havoc inside their body.

Many chronic conditions tend to fluctuate in severity — some days they are up and about, and during others days it’s difficult to work and function socially. This confuses those who can’t “see” why one day is good and another challenge.

When trying to explain their disability, sufferers are frequently met with the response, “but you look so good.”

We are sharing stories of people’s journeys with their illnesses. The idea is to state what the illness has taken away from their lives and what patients are missing out on due to these conditions. We hope by talking and sharing about their invisible illnesses, we can allow people to better understand what they are going through despite “looking so good”

Millions Missing

I miss going wherever I want without any restrictions.  Miss being able to do the simplest of tasks and not having to ask for help constantly. Miss walking in heels. Miss eating some of my favourite foods because I have problem chewing. Aaarggh!

I used to attend lots of literary programs, sit late to read and write. Fatigue keeps me away from these now, mostly. I miss it. And yes, I miss long heels too!

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I miss being adventurous, a go getter. Now even a stroll requires careful planning and calculations and too much energy.

Seeing all the stuff that needs to be done around the house and yard, but not being able to do much about it. It’s frustrating to stare all day at walls that need scrubbing, rugs that need cleaning, and rooms that need thorough cleaning , but not be able to do it myself or handle the disruption of hiring someone else to do it.

I miss being fit.

My profession as a midwife has always been my dream ever since I was little but unfortunately can’t do that anymore because I am limited in so many ways. Bending, standing for long, using my arms especially my left hand is scary. Sometimes holding unto a pen or a phone can cause so much pain and persistent with my arm getting swollen for days. The constant feeling of fatigue and joint pains makes it impossible to do basic chores at home, can’t drive no more and sometimes I need help with keeping my personal hygiene in check. My speech impairment (slurred speech and stammering) and brain fogs make it uncomfortable to talk, communicate effectively and socialize with people. I miss the old me.

I miss doing simple things like taking out my kid’s car seat and being able to fix it back; brain fog took that from me. I miss running; painful joints took that away.  I miss working all day; fatigue robbed me of that.

I used to move around or stand for so long working but now I am limited to just sitting all day to do my work. High heels made me feel beautiful and good about myself.I miss wearing my high heels because now they make me feel unbearable pain.

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I don’t dance as I use to. I do just a little exercise now compared to first and for dancing which was my favorite now I don’t dance as I used to.

I miss chilling with friends and family eating and drinking whatever I feel for, I miss going on planned and impromptu trips. I miss multitasking without the fear of breaking down. I miss those days when I had no medicine to take, no labs to run and a visit to the hospital wasn’t on my calendar.

I miss the days when my sleep wouldn’t be cut short because I have to wake up to eat and take medications, no labs to run and no hospital visits. I miss the days when I could do a couple number of things without getting scared of breaking down or paying for it by being extremely tired in the mornings so much that I am stuck in bed. I miss the days when I didn’t have to think about which program or activity to forfeit in order to save energy for others I found more important.

I miss running around and wearing my high heels and cooking in bulk.

I miss eating fufu with my hands because I have sores on my right fingers. Going for programs like clubbing. I feel very sad when my friends don’t invite me for programs because they think I can’t make it. I also miss those days when I eat everything I want, no hospital appointments.

Inexhaustible strength was my reality, as well as physical power beyond normal. Now a child leaping into my arms can have me crying out in pain.

My mind and body matched, both swift, active and in constant motion. But now my mind has fallen out of sync with a body that can no longer respond.

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