MCSMN Blog

March 2, 2018

Multiple Sclerosis, Illusions, and “Working Understandings” – Experts by Experience

By Gil Greenman

Living with a chronic illness often means confronting your denial. I lived for eight years with multiple sclerosis (MS), thinking that my brain was beyond having new lesions. This was because I was taking a powerful drug called Tysabri. All my MRIs showed no new lesions.  However, my disease did progress, and I moved from walking unaided to walking with a cane.

Doctors took me off Tysabri, because they were not sure what it would do to me after eight years of taking it. I dealt with the worry about going on a new oral drug by telling myself that my current disease course was “secondary progressive” MS—what I believed was a disease phase where the body may progress, but new lesions did not form.

This denial was punctured by an MRI six months after I stopped taking Tysabri. There they were, looking at me like two owl eyes on my frontal lobe, the place where executive function lives. New lesions.

It was terrifying! For so long I trudged through complicated chapters in my life thinking I knew what the distant shores of new life would likely hold. The next lesions could catapult me into a totally different place. Pain, paralysis, optic neuritis all seemed possible.

My doctor’s immediate response was to put me back on Tysabri, but my blood was not ready to receive it without an unreasonable risk of intentionally fatal infection. Today, a couple of years from the onset of this crisis, I am on the latest drug, but am still having new lesions. Just like the oral medication was an illusion, my current medication may be an illusion as well.

People like me often live in a world of denial and illusions. We sometimes call them “working understandings.” They are based on some facts, some experience, and more often hope. Some serve us for years and drive many good decisions.

What is not an illusion is that everyone is unique—everyone, and certainly the presentation of the mystery of MS in each person living with MS is unique. We just don’t know for sure what will help. All we have are studies, (with good or poor outcomes), and our experiences. And uncertainty—we try to get the best information and counsel we can, but ultimately, we must make a decision about what to do, every day.  And, when we take the time to explain the journey to family, friends, and caregivers, we often receive enormous support.  I know I have.

So now I must become bigger, like a wave in the vast ocean. I must let the tide take over, and if a good option arises again, hurl myself upon it. Until then, you will find me trying to float on the water of faith—faith that I am enough, worthy of love and belonging, and that the universe unfolds as intended. I struggled my whole life to find this faith. Looks like it’s time to cast off now, to trust the supporting waves beneath me, replace denial with acceptance, and live the next chapter of this life.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Gil Greenman is the author of the blog, A Fortunate Man with MS.  He is a trustee of the Pacific Northwest Chapter of the National Multiple Sclerosis Society. Find him on Twitter at @fortunatemanwms.

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Tags: Community Development, experts by experience, Member Profiles, MS, Patient Involvement, patient story, Strategy, Tactics & Best Practices

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