A multiple sclerosis (MS) diagnosis can stir up many emotions. Fear, anger, relief, denial, and confusion are common. Each person’s experience is unique.
The team at MultipleSclerosis.net invited the community to “Share what life with MS after diagnosis really feels like.” Respondents provided their insights into life after diagnosis.
Responding to a diagnosis
Responses to an MS diagnosis vary. Each person’s history, psyche, and outlook affect how they process their diagnosis. Some respondents felt relief to have an explanation. A diagnosis gave them more options for managing and understanding symptoms.
“One’s temperament and personality have a lot to do with their response and how they navigate an MS diagnosis.”
“I was relieved to have an explanation for the symptoms I was experiencing. It’s not a death sentence. Things could be worse!”
“I’m thankful to still be able to work a full week and pretty much live a normal life. I know when I need to take it easy, though.”
Adapting over time
Responding to life after diagnosis is not a one-and-done event. Symptoms get worse, life changes, and the body keeps adapting. Many respondents shared how life changed multiple times over the course of many years.
“Life as I knew it became life to learn and be able to change.”
“I was one of the lucky ones initially, as no really bad things happened. Then, I lost a few important people, and things started getting worse. Work became increasingly harder, my mental abilities gradually declined, and now I am on disability. Since that point, I have stabilized, and my emotional mindset has improved.”
“I was diagnosed in 1994, and it changed my life. I didn’t know much about the disease, but the staff at the MS clinic at the University of British Columbia Hospital helped so much. I thought it was a death sentence. I remember that I couldn’t stop crying for what seemed like forever.“
“Like every day, you are just trying to get used to and accept ‘the new normal.’”
Going from fear to acceptance
Many members’ first response was fear. Having a diagnosis and not understanding what it may mean was scary. After some time and learning about MS, the future felt less frightening. Respondents learned to accept and navigate the changes as they came.
“Terrifying! Then, as the years go by, it’s just part of life. You just accept and do life, albeit differently, but I’m not afraid.”
“Nineteen years. First, the world-class pity party. Then the first 10, total denial, keeping it a secret to avoid professional suicide…the next 9 years…eye rolls when people tell you, ‘You don’t look like you have MS.’ It hits you you’re still OK, know triggers to avoid, accept modifications to lifestyle, which probably would have been necessary with age anyway. People’s reactions? Educate them or walk away.”
Educating yourself and others
Education is key after a diagnosis. Respondents shared that learning about MS helped them feel prepared and in control. Understanding MS also helped respondents educate others when they made unkind or ignorant comments.
“Diagnosed in 2020. At this point, everything I’ve learned about my disease I’ve learned on my own.”
“While I feel a need to educate people, there are just some days I do not have the energy. (The hardest thing to explain is the sudden onset of fatigue…best description I’ve ever heard, ‘lay down or fall down, those are your options.’)”
“I was diagnosed 34 years ago. The more educated I became and the more I listened to my body, the less scared I became. I have good days and better days!”
