My battle with an Invisible Disease

15 May 2019

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

“Desiré Harris, 23, African American women in good health, has asthma but that has been managed and treated under the care of her primary physician. Both parents are still alive, the patient’s family medical history includes hypertension, diabetes and her paternal grandfather died of a stroke.

Ms Harris has come in with complaints of numbness in the lower extremities. Labs and imaging all appear normal and the patient is coherent and responsive. Recommend patient make an appointment with her primary for further follow-up if symptoms persist.”

This is what I heard over and over again from doctor after doctor. They didn’t see anything wrong me and I started to feel like I was going crazy! Well, I followed up will my primary doctor, a lot! But the numbness continued and spread before I knew it, I couldn’t even hold a pen to write my own name.

 

Let’s take a step back.

My story begins in 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. I was no stranger to stress and the physical effects it could have on the body as I had suffered from migraines my entire life that was often brought on by stress. But in early 2008 I had started experiencing random intermittent 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. 

After several days of my legs staying this way, I made an appointment with my primary doctor, she saw nothing physically wrong with me. I was still walking but given that I had a history of back problems we figured maybe what I was feeling was just the result of a pinched nerve from my years of being a dancer and falling off playground equipment flat onto my back as a child. So, I started making appointments to see a chiropractor, I went there every other day. While I go some relief, the numbness never really went away. Then one day about a month after first experiencing the numbness, I woke up numb from the neck down.

Panicked calls and appointments with my doctor, lead to referrals to other specialists. But the appointment to see a specialist was weeks away and I was experiencing discomfort continuously now. 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. In a last-ditch effort for answers, I started going to the ER almost every day for a month. I struggled to try to explain what my body felt like, 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, but I could feel something was wrong!

After a month of frequent ER visits my appointment to see the specialist arrived. I was so excited because I was convinced I would now get some answers. I explained to her the best I could the numbness sensation I had been suffering with, puzzled she completed a neuro-conductive test on my legs. The result: everything looked normal. I was at my breaking point; it took all my strength to hold back my tears when she walked out of the room.

After several minutes the doctor stepped back into the room, and she uttered the words “I believe you”. She believed what I was describing was real, she trusted that I knew there was something wrong, she just didn’t know what. If nothing else had resulted from that appointment at least I knew I was not crazy. As my appointment came to an end, the doctor’s husband (the Head of Neurology at the neighbouring hospital, where I had become an ER regular at) walked in. She explained my symptoms to him, he proceeded to do his own examination and agreed that something was wrong, but he didn’t know either. He looked at me and told me to go straight to the hospital, admitting me would be the only way to get the answers I had been searching for.

For a week, I laid in a hospital bed a medical mystery and my only visitors were my boyfriend at the time, my dad and doctors, lots of doctors. With each doctor, the list of possibilities was narrowed down. Two MRIs, dozens of blood draws, and two awful lumbar punctures later the one thing they knew or certain is that my immune system was normal and that the lesions in my spine and brain didn’t belong there. While I didn’t leave the hospital with a Multiple Sclerosis diagnosis I later learned the neurologist who had admitted me into the hospital had suspected it was that all along, he was just too afraid to give me a diagnosis that would forever change it.

May 2008, during an appointment I heard and read on paper for the first time that with complete certainty I had Multiple Sclerosis (MS).  Truthfully, I had no clue what MS was but with a quick google search despair set in. While I calmly shared on social media my diagnosis and about how grateful I was to have answers and how I would overcome the challenges that were ahead, behind closed doors I was broken.

You see, I am a planner. I have had my life planned out since kindergarten, just ask my mom. MS was not in my plans and from what I read online I was terrified. I wasn’t ready to lose everything I had worked 23 years for. Would I ever dance again? Would I continue to decline? At that point I couldn’t even work, my days were spent looking online and coming up with every worst-case scenario and trust me when all you can do is lay around at home “resting” your brain comes up with some really depressing possibilities.

While 11 years, doesn't sound that long ago, 11 years ago I could barely find any resources for information about people living and functioning “normally” with MS. One of the hardest parts of my diagnosis was that I could barely find anyone to connect with, it was impossible to find anyone my age who had MS too, I felt so alone. No one around me knew the burden I carried the first few years of my diagnosis. While modern medicine paired with my early diagnosis helped restore most of my physical changes, to this day I find the emotional healing of my MS diagnosis to be a work in progress.

Knowing what I know now and looking back, I had MS symptoms before my numbness. So busy with life I brushed off my slurred speech, my balance issues and how many times I was lucky to have a wall there to catch me when my feet couldn’t keep on a straight path. The human body is a pretty amazing machine and does a pretty good job of giving us warning signals when something is wrong.

Unfortunately, I am in the minority when it comes to a quick diagnosis. While my diagnosis was the result of being in the right place at the right time, I think it has a lot to do with listening to my body and advocating for myself even when medical professionals doubted me simply because they couldn’t see it. Those of us with MS know just how frustrating having an invisible illness can be. This is why MS patients have to be their own biggest advocate. We are the ones living with it, we are the ones who are experiencing the symptoms, just because we do not look sick does not mean we are not. If we are not willing to fight for yourself, who is, it’s tiring and frustrating but it’s about us taking control of our lives.

11 years into living with MS I decided early on to continue to be my own advocate, I am not stopping until I get the answers, not just for me, but for every one of my fellow warriors who is living with MS and other invisible diseases. I want to remind them they are not alone.

Every year, as I approach my MS anniversary and my annual fundraising campaigns I am reminded that I don’t just want to survive I want to live. I cannot give up the fight for myself.

I still work full-time, even when several doctors told me to stop working years ago. I knew that for me, personally, I could not let MS win no matter how many flare-ups or bad days I have. I value my intellect when my body fails me that is the one thing I have, so giving up my career has never been an option, although I have shifted into a sector that is less stressful. Being an advocate for my health, I continue to work with the doctors to make sure I can live the life I want. 

I am a little stubborn but when it comes to health that’s a good trait, that is what gets things done. My mum would always say that I was quite the determined child and being I raised in a house with 4 sisters, we were taught to be strong and speak up. Because of that, when the time came around where I needed a voice, and to stand up for myself, I could.

I knew what I was feeling, and I knew it was real, and I had to get answers. I wanted to have my life back and I was tired of being tried and I was tired of not feeling well, and I wanted to live my life. Sometimes, you must hit rock bottom to know that’s not where you are willing to stay. Once you have been there, ‘no’ is not an answer you can accept. Everyone needs to know that it is okay to speak up for yourself, you’re only given one body, treasure it.

How did you start telling people?

I’m a pretty transparent person, some would even say I share and speak my mind too much, but I started telling people through social media from day one. My friends and family knew I hadn’t been feeling well and a lot of people would check in on me. After my hospital stay, I wrote a post about what the doctors thought was wrong with me and on the day of my official diagnosis I wrote a long post because I knew my MS journey wouldn’t just affect me, it also impacts the lives of so many close to me.  I never felt shame about my diagnosis, but I know many do. MS is not the result the something that we did or failed to do.

All I knew when sharing my diagnosis is that other people needed to know what MS is. I quickly saw that there was a void in society where people with chronic illnesses often found people didn’t know about their conditions and they had a hard time finding people to connect with who had a similar experience. I knew sharing my story could directly or indirectly help someone else in their journey to find answers about their health.  MS is a second ranking neurological condition for people in their 20’s yet I never even really knew what it was. The conversation has to start somewhere, and I am ok with sharing my story with any and everyone.

 

Over the last 11 years.

Living with MS is a full-time job and people don’t realise it because they don't see it. They look at me and they think you look fine, you look healthy, what is wrong? I tell people MS does just stand for Multiple Sclerosis, it stands for My Story, My Struggle, and My Strength.

For the first few years, I would have flare-ups 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 be vulnerable behind closed doors as I questioned my worth. I stayed in an unhealthy relationship longer than I should have. 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.

MS is a rollercoaster and I hate rollercoasters! I worked so hard and overcome so much to get to where I am, but it is not where I thought I ever would be, so I have grieved. Trying to align the life I thought I’d have with the life I do have, is hard. I can handle the physical, that’s okay, but the impact it has on my ability to maintain relationships and continue so many of the things I used to like to do, can be struggling. I have found that my new normal is okay. Life is not where I thought I would be but without a doubt am often reminded it is where I should be.  I have connected with so many people because of my diagnosis, I have discovered support systems that continue to grow. That is the high of this roller coaster. I have my doctors, my MS warriors my family and finds who remind never to give up this fight, they love and support me, for me and for anyone that is enough.

The low is that for most of us living with MS are dealing with the grief over what we feel we have lost, the life we could have had without MS, and I don't think that ever goes away.

 

Why Kiss Goodbye To MS?

Why not? If I can help spread awareness, I will gladly join any campaign that does that. I want the world to see that just a regular person can make a difference. I also understand the value in connecting with others going through shared experiences, it is therapeutic and helps with the emotional exhaustion of a diagnosis. I want to be the resource I saw was lacking when I got my MS diagnosis.

In one of my late night (I am also diagnosed with chronic insomnia) social media browsing I came across Kiss Goodbye to MS last year and it looked like a great campaign that while fun had a great purpose in helping MS patients, and others affected by MS by uniting them globally. It truly showed that MS is not a battle any of us should face alone and that we are not alone in wanting to find a cure. I have always been involved in local MS campaigns and outreach projects in my community the last 10 years, in honour of my 11 year MS anniversary it seems like the perfect time to join forces and raise MS awareness globally. I see the value of sharing our stories worldwide, it helps to build connections worldwide and shows others just how common MS really is.  Also, because I am in an international relationship with my boyfriend it is frustrating to think my ability to travel to see him is limited because he lives in a part of the world where access to healthcare is limited and resources or patients with MS do not exist. This is a problem, people all around the world need have access to healthcare that can help in the diagnosis and treatment of MS.

When it comes to MS, I want answers, I want to progress and I want a cure and that is something that needs to be done at a global level not just for those born into or living in advanced wealthier parts of the world.

There should be no reason why somebody across the world from me should not get the treatments they need. I want to help other people no matter where they live, obtain access to the treatments that have helped me so much, and to healthcare like mine which has helped me have a life I feared I would lose with my diagnosis. It is so easy for me to take for granted what I access to healthcare I have, being in a country where I have access to medication and doctors, but I know there are so many out there that that don’t.

I am grateful to have been diagnosed at 23 because I can imagine the amount of damage that would have happened to my brain and my spinal cord if I were left without treatment, my symptoms could have become a permanent part of my life. In that case all of my fears would have come true, the fear of not being able to walk, the fear of not being able to work, so I think there is a clear relationship between; awareness so people know what symptoms to look for and the access to capable doctors that allows for early diagnosis. The result, a better prognosis for people. This needs to happen for everyone globally.

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 are often fighting a silent daily battle with our bodies, and but because those battles are invisible it is hard to get people to listen to us. Our experiences are real, the number of people living with MS continues to grow. While I hate to see the numbers grow, I know there is power in numbers and we are not going to give up.

While we wait for a cure, I also tell newly diagnosed people that it is important to find and connect with people with similar experiences. They do not have to carry the weight alone, because MS it is a heavy weight to carry. You will learn in time to treasure your good days and find ways to cope through the bad ones, and plan.

That is my MS journey so far, from day one to year eleven. MS continues to be My Story to tell, and I am thankful to have platforms like Kiss Goodbye to MS where I can share my story in an effort to empower others. From the time I noticed my first symptom, until the time I was diagnosed was less than 6 months, but I know people across the world are still fighting to get their diagnosis, to get answers. Let’s help them not only get answers but let’s help them KISS GOODBYE TO MS!

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