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My battle with an Invisible Disease
By Desiré Harris
Published May 2, 2019

Desiré Harris from California, was diagnosed with Multiple Sclerosis in 2008 is joining the global campaign to raise awareness and find a cure.

Desiré Harri

Over 800,000 people in the US, and 2.3m people worldwide have MS and it’s a disease that affects twice as many women as men.

My story begins February 2008, I was 23, I was a recent college graduate. I was working a highly sought-after public accounting job. I had moved to a city where I worked long hours in a quest to climb the corporate ladder. In early 2008 I had started experiencing random numbness, it went from being one foot to one leg, from one leg to both legs. It felt like my limbs had fallen asleep, but I couldn’t shake the feeling.

One day about a month after first experiencing the numbness, I woke up numb from the neck down. I didn’t trust myself driving, the walk up and down the three flights of stairs to my apartment was daunting and the simple task of getting out of bed became a chore. I went to doctors, but all the doctors saw was someone who looked normal. How could someone who claimed to be numb, walk and talk. Over and over again I was turned away as they said nothing was wrong.  In a last-ditch effort for answers I started going to the ER almost every day for a month.

Eventually I met a neurologist who believed something was wrong, she just didn’t know what. Thankfully towards the end, her husband walked in, and he was a specialist neurologist, and he could tell something was wrong. He took a look at me, carried out visual tests and he said, you have to go straight to the hospital. Then after a week in the hospital and many MRIs scans later I left with the diagnosis of multiple sclerosis (MS).

What is like living with MS

I had no clue what MS was, all I could find were the worst case scenarios and they terrified me. It made my situation feel so much worse, it defeated me and although I desperately wanted answers, the last thing I wanted was a diagnosis that would last a lifetime.

Living with MS is a full-time job and people don’t realize it because they don’t see it. They look me and they think you look fine, you look healthy, what is wrong?

For the first few years I would have flare ups of those first symptoms pretty frequently and it would put me out of work for a while, it would mess with my emotions a lot! I missed the old me, it was not an easy grieving process. Unfortunately MS made me vulnerable, I questioned my worth, I stayed in an unhealthy relationship longer than I should have and I worked a job where I experienced emotional harassment. For several years I accepted what was in my life because I was afraid that I would have nothing else.

I have worked so hard and overcome so much to get to where I am, but it is not where I thought I ever would be. I can handle the physical, that’s okay, but the impact it has on my ability to maintain relationships and a normal life can be struggle. Life is not where I thought I would be but without a doubt I am often reminded it is where I should be.

Why Kiss Goodbye to MS?

What helped me early on was going online and connecting with different groups and different people on social media. In my search I came across Kiss Goodbye to MS, it seemed like the perfect platform to show the whole world that MS can affect so many different people.

I am grateful that I was diagnosed at 23, I can’t imagine the amount of damage that would have happened to my brain and my spinal cord if it was any later. I want to help other people in different countries get the treatments that have helped me to have a life I feared I would never truly have.

Telling the world

My message to the world is, “Don’t Count Us Out”. MS patients are some of the most determined and strongest people I know, we go through daily battles with our bodies and because those battles are invisible it is hard to get people to listen to us, but those battles are real and we still need answers, and we will fight for those answers.

Kiss Goodbye to MS is a global campaign with 13 countries raising money to fund research into the causes of the disease and to hopefully find a cure. The campaign also funds access to treatment which can have a dramatic effect on countries where treatments are not readily available or affordable. In May countries around the world are uniting to raise funds to cure MS and show the world they are united by this cause. Desire features in our global video alongside people from around the world.  For more information visit www.kissgoodbyetomsglobal.org

 

Categories: Family | Health | News (Family) | Op-Ed | Opinion
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