My career started off so promisingly and perfectly to plan. After completing two degrees, I secured a graduate position in a large telecommunications company. Almost immediately there were opportunities for development, promotions and financial reward.
Then only 10 months into my new job, I was diagnosed with multiple sclerosis (MS) at 22 years old. I was confused. Why now? Life was just beginning, but now it was tainted by inescapable uncertainty. According to my doctor, MS has no cure. Yet the prognosis was vague, the frequency and severity of future relapses unknown.
I soon became despondent about my career. What was the point of investing energy into my job? My plans and goals all assumed good health and functioning, not difficulties with mobility, vision, neuropathic pain, sensation issues and fatigue.
I decided to push on at work and was determined not to let MS impact my career trajectory. But at times MS literally stopped me. Unable to move, use my hands or properly see, I didn’t have a choice but to take time off and seek medical treatment in hospital.
Such episodes were becoming increasingly frequent and aggressive. Part of me realized my career was comprising my health. The hours, physical demands and stress were contributing to the relapses. But I loved my job. I thought resigning would render my studies and plans for the future wasted. And I was unsure what other options were available.
But I feared another relapse and began holding myself back at work and wasn’t realizing my potential. By my mid-20s, MS was placing a glass ceiling on my career. It felt unfair. And I began to despise this disease.
After spending months in a hospital unable to move, I decided I wasn’t prepared to compromise my health for my job. But I also didn’t want to be engulfed by negative energy and be fixated on how my career had been ruined.
In living with MS and trying to balance a career with good health, I wish someone had encouraged me to:
1. Be flexible.
I need to be open to the benefits of part-time employment. Yes, full-time work is my preference financially and for job satisfaction. But reduced hours enable me to invest time in my health and well-being.
2. Be innovative.
I need to be aware of how to benefit from rapid advances in technology. I can choose a position that enables me to still work even if not always in the office and be available wherever there is an Internet or mobile connection.
3. Be accommodating.
I need to create an environment at home and in the office that assists in pain management and conserves precious energy by requesting ergonomic furniture and highlighting the importance of a parking space.
4. Be approachable.
I need to have the confidence to be open about my condition, encouraging open dialogue with my colleagues and management. While I don’t need to discuss every detail, providing enough insight helps to allay misconception and maximize productivity.
5. Be inclusive.
I need to embrace my own difference. For years, I was determined to not allow MS to make me different and my health suffered. But the reality is that MS has made me different to others and that’s OK.
6. Be a leader.
I need to recognize I can have a role in breaking down barriers in the workplace. By being a success story, I can create opportunities for my own future and open doors for others.
7. Be excited.
I need to be open to and excited about new opportunities. Living with MS, I no longer create detailed career plans. Instead, I create space for unimagined possibilities that can still be part of my future.
Fifteen years on I continue to make these changes and to create a life conducive to my overall well-being. However, I can’t do this alone. Workplaces also need to be flexible, innovative and accommodating. Management needs to create approachable environments that encourage open dialogue without repercussion. And organizations must be inclusive, embracing difference and leading by example.
When both employees and employers challenge how they approach work, we can all become excited about the future — a future that benefits from the significant contributions people living with chronic illnesses and disabilities can make.