Multiple sclerosis: My story
How a disease that isolates people compelled me to connect
By Greg Orlick, a Genentech employee living with MS
At 29, I was ready to start the next chapter in my life with my fiancé. Little did I know that the new chapter was not as a healthy, happily married man. My engagement fell apart a month before my wedding. I tried to make sense of what had happened and I carried on with my life as much as I could, but the stress was overwhelming.
A few months later, I was in a business meeting writing on a whiteboard when I noticed that my handwriting was barely legible, like a kindergartener practicing his ABCs. A co-worker had to finish the presentation for me. That evening, I couldn’t even sign my name on the hotel ledger. Something was wrong, but what? I felt fine. When I got home, I asked my neighbor, a medical student, what she thought about this strange experience. She took one look at me and said, “Do you know the right side of your face is drooping?”
I rushed to the emergency room but found no immediate answers. Three days later, after dozens of tests, blood draws and scans, I got the fateful MRI result: cloudy spots in an image of my brain. Although everyone knew what this meant, the doctor didn’t confirm the diagnosis of multiple sclerosis (MS) until six months later, when my hands started to tingle and went numb. It was my second relapse.
Living with MS
Textbooks define MS as a disease in which the immune system attacks nerves in the brain and spinal cord, causing inflammation and damage. I have a different definition. MS is a mysterious, all-encompassing disease that takes over your life – if you let it.
MS affects everything connected with your brain and your nerves: what you see, how you speak, what you taste, how you think and feel. My symptoms have run the physical gamut over the past fifteen years. I’ve had muscle spasms. I’ve been legally blind in one eye (twice, during two relapses). I’ve had ankle pain that lasted for two years. I’ve doubled over in agony from hearing loud noises.
Approximately 2.5 million people have MS worldwide.
The symptom that I have to manage on a daily basis – that nearly all people with MS experience at some point – is fatigue. Not just tiredness, but chronic, debilitating exhaustion. Initially, I blamed my fatigue on lack of sleep, so I slept more. I changed my diet. I took supplements. I drank more and more caffeine. Nothing worked consistently.
Fear of being judged at work and at home causes many people like me to hide our fatigue. I still don’t always let on to my family and friends when I have no energy. I struggle to get out of bed some days, but I have found ways to cope. Since heat can increase fatigue, the air conditioning at home is set very cold. I also wear cool-fabric clothes, soak in the pool in my back yard, and take medication to treat the symptom. I have to be careful with outdoor activities when the weather is very hot, or I can be drained of energy for days.
Heat sensitivity, or Uhthoff’s phenomenon, is when body temperature affects nerve conduction and makes MS symptoms worse.
Although MS symptoms physically can take over my life, their biggest impact is mental rather than physical. I question every new sensation. I worry about every change. Is it my MS or is it just my body getting older? How bad is this relapse going to be? Will I be disabled by blindness or pain? How long will I have to endure this? I wrestle with anxiety about what lies ahead.
Every person experiences MS in a different way. The symptoms are completely unpredictable. They are unique to me. This makes MS an isolating disease, especially at diagnosis. I felt isolated from my former self, isolated from friends and family – isolated from everyone without MS. It was hard for me to wrap my own head around this disease, and the feeling of separation from others was really tough to come to grips with. Even now I struggle to share my relapses with those closest to me.
Half of people with MS experience depression.
I am in good physical shape, and can usually go several months without having a debilitating symptom. Still, every relapse is a reminder that I am sick – a reminder that everything could be taken from me tomorrow.
Loss of independence is one my biggest fears. If I can’t work, then I will be reliant on others. During a relapse when I had vision loss, I could not drive and had to take leave from work. Having MS has influenced some of my life decisions, such as buying a one-story house and paving our driveway, based on the possible future me – someone who can’t walk or climb stairs without help. Most people with MS eventually use a cane, walker, or mobility device, and I am preparing myself for a potential future disability.
I try to overcome my fears and feelings of loss and isolation with a positive attitude and support from my friends and family. My incredible wife Sonya joins me in my battle with MS. Having an understanding partner who has taken to the time understand the disease and fight it head on truly makes the fight easier.
Connecting to Others
Sonya and me at an MS event
I believe the reason I have MS is to help others who suffer with this disease. My mission is to make a difference in their lives. Through my volunteer activities, I’ve worked as a patient consultant, talking to people with MS about anything and everything. Just listening and answering questions can go a long way, since no one understands what MS is like except another person with MS. Sonya and I have also spent countless volunteer hours in support of a a prominent advocacy group to bring awareness to MS and help support those who need it most.
My work with patient advocacy groups and MS community members has shown me the real value of this kind of understanding and compassion. I’m more open and accepting than ever before. I feel less alone and more connected – and I want to help others feel connected, too.
Fifteen years ago, I could not have predicted my life would turn out this way. The next chapter seemed grim. Now I can proudly say that I am a happily married man, living the healthiest life possible while managing my MS.
- Hauser SL, Goodin DS. Multiple sclerosis and other demyelinating diseases. In: Longo DL, Kasper DL, Jameson JL, Fauci AS, Hauser SL, Loscalzo J, eds. Harrison’s Principles of Internal Medicine. New York, NY: McGraw Hill Medical; 2012:3395–3409.