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Professional Wellness

By NJ White
October 28, 2020

There are things you start to plan for when you work, start making an income and have benefits. You make sure you and your family have medical, dental and life insurance. You make sure you have a retirement plan.

I did all of that and now in hindsight, I realize I never considered not working through to retirement, and I definitely wasn’t mentally or financially prepared to be diagnosed with a disease like MS. I never knew that being sick is a full-time job.

I never considered the amount of people who can’t work because of having to consistently go to doctor. I never thought about the costs of medicine – I’m talking about real medicine, not the stuff you pick up at your neighborhood pharmacy. I never considered how lawmakers are allowing people to suffer in financial ruin due to illness and without proper medical care. I never considered how insurance doesn’t really insure you of anything but a bunch of “nos,” heartache, frustration and bills. I knew nothing about FMLA restrictions and ADA accommodations. Until now, I knew absolutely nothing about being sick in America, having MS or how to manage its presence in my life.

To be fully transparent, I realized very quickly I had no plan to manage a disease, and I couldn’t afford to get sick.

Here’s why:

Reason #1: Research estimates the cost of living with MS can be upwards of $70,000 a year, and hospital and therapy costs can pile on. Even with insurance, the out-of-pocket expenses can range greatly. There are prescription and patient support funds to provide financial assistance. However, doctor visits, testing and procedure copays, purchasing ability aids and home accommodations and remodeling efforts, all can substantially drive up the financial cost of your disease management.

Reason #2: FMLA is unpaid job protection for 480 hours – this translates to about 3 months of protected time off a year. After that, you’re vulnerable to your job and can be negatively impacted due to absences.

Reason #3: I had no idea of how to prepare for or how to manage going back to work with this disability. I was buried in feelings of being overwhelmed, and ill-prepared to manage my transition and advocate for my own well-being. One of the therapies provided for me at my local hospital was vocational therapy. My vocational therapist facilitated communication between myself and my employer. She completed the paperwork, met with my other therapists, and together, they created my accommodations plan. I didn’t even know what to ask for. She contacted all of my doctors, got the proper release forms and guided me through everything I needed to return back to work. Without the vocational therapist support, I am confident that my transition to work would have been much more stressful and confusing.

As I have transitioned back to the working, here are 5 key lessons I would like to share:

  1. Plan for the future now. Plan for not working, even though you may be young and healthy. Save what you can for when your life alters without notice and no choice. Ask yourself, how and to what means do I need to plan for the unexplainable?
  2. Don’t play Russian roulette with your healthcare. Review and choose your insurance plans wisely. Look closely at copays, coverage supports, compare and contrast PPO vs. HMO, and look at prescription costs. Pick up disability and long-term care insurance.
  3. Stay ready so you don’t have to get ready. Think about you and your family current needs, but plan for the “just in cases” when choosing insurance care. Have a medical fund.
  4. Education empowers. There are programs that help support seniors and “differently-abled” citizens. When and if needed, research to get financial support and resources.
  5. Vote! Think about medical care in America. It’s a tragedy that Americans have to choose between medical care and working. Pharmaceutical companies and medical care are quietly bankrupting our families and friends. We can achieve affordable and accessible healthcare; Americans need to make our country do it. I’m embarrassed that it took me getting sick to pay attention to healthcare in America. There are people who are suffering in silence and buried in medical costs. This is shameful.
  6. Take care of your wellness before you have to take care of your illness. You’ve heard that before. But that’s literally and figuratively. Yes, treat yourself right and be healthy in your practice to try to prevent illness. But also figuratively speaking, do things right now so that any potential illness can be taken care of.

NJ White

One year into a prolonged and late MS diagnosis, NJ is managing living and thriving with MS by establishing her voice for education and advocacy for multiple sclerosis. New to blogging, NJ is excited to increase transparency, awareness and empathy for this illness.

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