Navigating the financial impact of a chronic disease can be overwhelming. Medical bills and potential changes in income can add a huge layer of stress to an already challenging situation. I learned this firsthand when I was diagnosed with a rare cancer in 2020. I thought I had a great grip on my money until medical bills and medical leave led to financial loss. You can learn about my experience in a blog I wrote, Coping With the Extra Costs of Cancer.
This experience made my work at the National Disability Institute (NDI) even more important to me. NDI is a national organization with a mission to improve the financial lives of people with disabilities – including those with chronic health conditions like neuromyelitis optica spectrum disorder (NMOSD). For nearly 20 years, we have supported individuals in managing their finances through a range of strategies and resources you can find within our Financial Resilience Center.
At NDI, we understand financial challenges and the impact they can have on the lives of people with chronic health needs. That’s why we’re proud to share tools designed to empower individuals living with NMOSD, as well as those caring for them, to help manage financial changes.
Below are several tools that I relied on during my cancer journey that may also benefit those facing financial challenges.
Strategy #1: Prepare yourself emotionally for what lies ahead
We don’t talk enough about how money impacts us emotionally. The amount of money we have, our skills for managing money, the loss of money… all of it can lead to feelings of shame, doubt, anger and insecurity. You may find that you avoid money conversations, distract yourself from thinking about your financial situation or even hide bills and other reminders of money out of sight so you don’t have to face it at all.
These actions are normal and happen when we don’t want to face uncomfortable things. But it’s important to recognize the feelings because bottling them up can worsen a situation. Talk to a friend, meet with a therapist or try journaling. When you have any negative self-thoughts, challenge them. If your brain says, "I'm not good with money," ask yourself for proof. Is that true, or are you struggling because your income has decreased or your bills have increased?
Focus on progress and not perfection, and celebrate your wins, no matter how small. As you reflect on your past financial decisions, give yourself grace. Acknowledge the financial impact NMOSD has had and think about what you can do today to help yourself.
Strategy #2: Build your financial confidence with financial education
Financial education is an umbrella term for understanding your income, expenses and financial products so that you can make informed decisions. There are many high quality free financial education tools that you can use to build your know-how and your confidence.
- Pennsylvania Assistive Technology Foundation (PATF): PATF’s free online financial education is designed to help people with disabilities, their families and advocates learn about organizing and managing finances, with topics like budgeting, saving and making smart financial decisions.
- FDIC (Federal Deposit Insurance Corporation): The same federal entity that protects our money in banks provides free financial educational resources through the Money Smart suite of tools covering various topics like income, expenses, saving, credit, debt management and financial planning.
- LEAD Center: The Secure Your Financial Future – A Financial Toolkit for People with Disabilities provides resources for you along the employment life cycle from preparing and starting a job to maintaining employment, transitioning careers, dealing with job loss or retiring.
- National Disability Institute (NDI): We offer free accessible tools that add to the financial education skills you’re building. We also offer just-in-time guidance on a range of financial questions through our Financial Resilience Center.
Financial education can help you build your confidence and money know-how to give you the boost you need to take action.
Strategy #3: Get the support you need from a financial counselor, credit counselor, housing counselor and/or benefits counselor
Did you know there were so many counselors out there poised to support you with your more challenging money issues? Let’s go over each of these types of counselors and how to find one that you can trust.
- Financial counselors – A financial counselor provides personalized guidance and support based on a financial plan tailored to your specific needs and goals. Look for organizations that offer services from a certified financial counselor. Financial counselors are not yet available in every community, so we recommend you ask about financial counseling in your area by calling the 211 helpline or connecting to your local 211 online.
- Credit counselors – Credit counselors are financial professionals who specialize in helping individuals and families manage debt and improve their overall credit health.
Choose a nonprofit credit counseling agency that offers free or low-cost services. Avoid for-profit companies that charge high upfront fees. Look for agencies accredited by organizations like the National Foundation for Credit Counseling (NFCC) or the American Financial Counseling Association (AFCA).
Trusted credit counseling organizations and resources include:
- Housing counselors: Housing counselors offer unbiased advice and support on various housing topics, including homeownership guidance, foreclosure prevention and rental assistance.
The U.S. Department of Housing and Urban Development’s (HUD) Find a Counselor Tool is a trustworthy place to find a housing counselor. Some National Foundation for Credit Counseling (NFCC) agencies also offer housing counseling. If you need both credit counseling and housing counseling, NFCC can be a good one-stop resource.
- Benefits counselors: Benefits counselors help individuals who receive Social Security Disability benefits (SSDI or SSI) understand how work can impact your Social Security benefits, your healthcare benefits and some other benefits such as rental and food assistance.
If you need to apply for benefits, your local Center for Independent Living is a good place to start. These organizations were created to support people with disabilities and chronic health conditions and can help you connect to benefits, independent living resources, employment, support groups and case management. Find your local center by state.
Benefits counseling services are free; you should never be asked to pay for this guidance. A trusted resource is the Ticket to Work Help Line funded by the Social Security Administration at 1-866-968-7842 or 1-866-833-2967 (TTY). You can also use the Ticket to Work Find Help tool for more resources.
Remember, you are not alone. NDI and the NMOSD community are committed to supporting you with additional resources on this and other topics that are important to you. By using these strategies, you can say, “NMOSD Won't Stop Me” from gaining greater control over your financial life.
About Elizabeth Jennings, National Disability Institute
Elizabeth Jennings, M.A.P.P., serves as the Deputy Director of National Disability Institute (NDI). In this leadership capacity, she oversees operations, manages grants and contracts, provides guidance to multiple teams and champions an inclusive organizational culture of belonging and mattering.
Elizabeth has worked in support of the disability community for the past 25 years. Highlights of her work include research on the financial status of people with disabilities, training on the interplay of employment and public benefits and contributions to NDI projects that have advanced inclusion, facilitated employment, increased savings and improved the banking rate of people with disabilities.
Elizabeth earned her Master of Applied Positive Psychology from the University of Pennsylvania. She is passionate about fostering meaningful dialogues on workplace well-being, cultivating employee resilience and championing interventions that nurture and amplify the unique strengths of individuals.
