When SAP employee Susanne Thoma was diagnosed with MS, she started wondering about her life. Here she shares how her world changed — and how it didn’t.
Sometimes, Susanne just feels completely drained. Tired, exhausted, empty. These symptoms are called fatigue syndrome, and are a byproduct of multiple sclerosis (MS). But Susanne has such a naturally cheerful and energetic personality that the people around her sometimes find it hard to believe that she feels this way. On such days, however, she needs more support and consideration from them, because her body “just can’t always keep up.”
Her own experience has taught Susanne never to judge a book by its cover: “You never know what burdens they may be carrying, whether it is an illness or other kinds of worries.”
Multiple sclerosis is an autoimmune disease, which basically means that Susanne’s body is fighting itself. She has infections in her brain, and some of her nerves are damaged. Her symptoms first started in 2013, when she suddenly couldn’t see out of her right eye. She was immediately taken to the hospital, where she was diagnosed with MS.
“I felt completely helpless,” Susanne remembers. “Like I was being ripped out of my own life. When you’re lying half-blind in the hospital, you start asking all these questions: Do I have a happy life? Am I in the right place? Am I really doing what I want?”
Nowadays, Susanne is medicated and apart from fatigue only has few problems in her everyday life. Nobody knows exactly what the future will hold; the only certainty is that MS becomes worse over time. There is no cure. Doctors can only relieve patients’ suffering and slow down the deterioration process.
“The hardest thing is dealing with the uncertainty of it all,” Susanne confesses. “It’s frightening.”
This was part of the underlying reason why she chose to speak openly about the illness with her colleagues at SAP from the start. Her coworkers are aware of her situation and are always prepared to help. Susanne shares that she finds support in the environment at SAP, but only she can help herself where it matters most. “I had to learn to accept the disease instead of fighting against it. Now I listen to my body much more.”
Part of that means taking breaks every now and then because her immune system is weakened. Some days, Susanne goes to a yoga course during lunch break or a jazz dance course in the evening — and she makes sure to leave the office on time.
This can be a challenge, because her job “is just as exciting and demanding as it always was.” Susanne is an HR expert for talent development and an internal coach at SAP. “I’m thankful for the flexibility and support SAP offers me,” she says. “My illness is not really an issue at all, and I don’t feel like I’m restricted at work because of my situation.”
“We don’t treat her differently,” agrees her manager Bhuvan Naik, head of Global Talent Experience. “Susanne takes care of the same tasks, and has the same career development opportunities as any other employee.”
Susanne finds the security she needs in her family, friends, and at work while facing these times of uncertainty. And she has goals. Advancements are continually being made in MS research, and Susanne has hope that one day they will find a cure. Meanwhile, she has started renovating her grandmother’s old house – even though she doesn’t know if she will still be able to climb the stairs in a few years. Her dream is to turn the house into a “happy home” for her and her partner. “MS does not define my life. I’m still me.”
It must be a hard balancing act for Susanne between “accepting the disease” and “not letting the illness take over her life.” How does she find the strength to stay positive? Susanne says that while she was in hospital, she realized she could answer all the meaningful questions of life with “Yes.” Yes, to her private life. Yes, to her work life.
“Of course there are moments when I can’t help asking why. Why me?” she admits. “But I always try to look ahead and live my life moment by moment. I don’t wait for anything, I do it now.”