MS’ 9,585 Days

MS used to have me. For a quarter of a century, I went to extraordinary lengths to hide my MS from everyone but my very closest family and friends. I thought that by hiding my MS and lying about the source of my ever changing ailments, I was in control of it.

I did not make my peace with MS and come to a gradual and gentle acceptance of my illness. I didn’t even make the choice to tell people when the disease backed me into a corner. I thought my world was going to fall apart if I shared my diagnosis. I was sure I would lose my identity, that my strength would evaporate along with my self-esteem, and that people would no longer see me. They would see only a diseased, weak, helpless individual. So I lied.
The lengths I went to and lies I told to avoid letting anyone know I had MS were exhausting. I ghosted out of parties so I wouldn’t have to explain why I was leaving early. I refused invitations for weekends in summer homes because I was afraid the sleeping arrangements would prevent me from obtaining my prerequisite 9 hours a night, and I failed to show up for social events to which I had committed — it was easier to deal with the reputation of being a flake than to explain I had MS.
While I was eventually forced to tell friends in New York about my MS after a major relapse in 2010 — including a month long stay in the hospital and highly aggressive physical therapy to get me walking again — 9 weeks later I moved to Seattle. I showed up in Seattle, stubbornly without my crutches, and I didn’t tell a soul that I had just stopped using a wheelchair. In Seattle, I had plenty of reasons (excuses) not to tell anyone about my MS: I had finally received treatment for a long-time broken bone in my foot, I had fallen face forward on a sidewalk and broke my right rib, I had fallen over in my garden and broke my right foot…

I made new friends, I found a new job, I found a great MS clinic, and I quietly and privately managed my disease. I even set and met fitness goals. One chilly day, I swam the 2.4-mile span of Lake Washington. I started new medications. And of course, I managed the daily ups and downs of fatigue, cognitive failure, vertigo, periodic incontinence and various states of disability.

But, by hiding my story, I also hid my true self. You cannot live a lie for 25 years without paying a colossal personal price.The longer I told my lies the more they fed and the deeper my fears became. I constantly questioned my experience with MS, and underlying it all were two fundamental questions, “Are you doing all this for attention? Do you really have MS?” These thoughts were pervasive, even when lying in a hospital bed being pumped full of steroids unable to walk, I still questioned myself and my diagnosis.

Those lies did not want to relinquish their position at the top of my emotional hierarchy. My lies were fat and happy; they had a cozy symbiotic relationship with my psyche that they did not want to give up. Just the idea of purging them sent me hurtling to the bottom of a deep dark lonely hole where I believed I would live for the rest of my life. I was isolated, terrified and completely lost. It was without doubt the darkest time I had experienced in my 27 years of living with MS. The depression was crippling, and I could focus on nothing but my weaknesses and the devastating and irrevocable effect that telling the truth would have on my life.

It was only when I was finally forced to introduce MS to my world that I realized that my disease had been controlling me for almost two thirds of my life, and not the other way around. And, that is when my life changed…
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Rachel Padgett

Rachel was diagnosed with MS in 1993. Originally from England, she now lives in Seattle with her husband, Brian. She enjoys cooking, traveling and swimming for exercise and recreation.