Navigating a Career With a Rare Neuroimmune Disorder

The difficulty of balancing a professional life while also dealing with the full-time management of a rare neuroimmune disorder can be daunting. Whether you are already in the workforce or thinking of entering it, you may have some questions. How do I talk about my disorder with my employer? Are there any resources out there I can use? Is it possible to even have a successful career post-diagnosis?  

The Christopher and Dana Reeve Foundation shares helpful questions and advice in their Living With Paralysis: Employment for People with Disabilities guide. In it, they explain “Disabilities do not need to limit the pursuit of fulfilling work. Whether seeking a career in an office or building one from home, there are many paths to successful and rewarding employment. Disabilities may affect the shape of a life, but they do not determine what is possible.”

Today, we’re sharing some great resources and tips to help you move forward with confidence in your career and most importantly, yourself. 

Be Your Own Advocate

Self-advocacy is defined as “the action of representing oneself or one’s views or interests.” This takes practice. It’s crucial to know your worth and understand your rights. If you are located in the United States, a great first step is looking at the Americans with Disabilities Act (ADA), which prohibits discrimination and ensures those with disabilities have the same opportunities as everyone else. 

Later in the Living With Paralysis: Employment for People with Disabilities Article, Dr. Anjali Forber-Pratt, Paralympian, former SRNA Board Member, and current Director of the National Institute on Disability, Independent Living, and Rehabilitation Research, states, “It’s awkward to put yourself out there, but it’s not about the disability,” she says. “It’s about saying, ‘These are my skills, and this is what I’m looking for.’ It’s about reaching out to people and leveraging the relationships that many of us already have in terms of our stories.”

Do your research on the company. What is their medical leave policy? If your job is in-person, do they allow remote work when you need it? Do they value accessibility and if so, how does their office environment support that? Even if you’ve been with your employer for a long time, it is never too late to begin advocating for yourself. Approaching the conversation with confidence is the key. 

What to Ask for

The Job Accommodations Network is a great resource offering free and confidential guidance on job accommodations and disability employment issues. According to their website, they can assist with individualized consultations about: 

• Employers and their representatives seeking guidance on practical ways to engage in the interactive process, provide job accommodation solutions, and comply with Title I of the ADA;
• Individuals with medical conditions and disabilities seeking information about job accommodation solutions, employment rights under the ADA, and self-employment and entrepreneurship opportunities; and
• Family members and rehabilitation, medical, educational, and other professionals in their effort to support successful employment outcomes for individuals with medical conditions and disabilities.

The most important thing we want you to remember is that you are not alone. Your needs and accommodations are important and worth speaking up for.