My MS started when I was 40. I had an established career, a comfortable income, savings, and excellent benefits. I was able to quickly and effectively get medical treatment, a diagnosis, and fight MS. If this had happened in my early 20’s, when I was broke and uninsured, I would have been screwed. If it had happened in my 30’s, when I was self-employed, I don’t know how I would have survived. If it had happened even a few years ago, when I was living paycheck to paycheck, digging out of a post-divorce financial hole, and paying for full-time child care, it would have devastated me financially. In my 40’s, I was able to fight MS.
When I lost vision in my right eye, I had no idea what was going on. I called the eye doctor, who saw me the same day. She consulted with a neurologist, who sent me to urgent care, started steroid infusions, and ordered a brain MRI. I had a follow up with a neurologist that week, and later more MRIs, a lumbar puncture, and several consults with an MS specialist. I got new glasses. My job accommodated all of this. My family helped with my son, cleaned my house, and drove me to appointments. I changed my diet, started taking vitamins, and experimented with various supplements. I started a disease modifying therapy (DMT) before my diagnosis, and got prescriptions for muscle relaxers and something to combat fatigue. My insurance covered most of my medical bills and I had savings to cover the not insignificant out of pocket expenses. I’ve heard other people’s stories of fighting with insurance, driving hours to see a doctor, losing their jobs, and not being able to afford treatment, and I am aware of how fortunate I am. I am privileged. Over the last year, I’ve been struck by all the privileges that impact your ability to fight MS.
MS is hard to diagnosis. It often requires MRIs, blood work, and a lumbar puncture. You will need to see a neurologist. It is a chronic, incurable illness, that will require ongoing medical tests and appointments forever. To fight MS, you need to take medication. Really freaking expensive medication. On average, MS medications cost $70,000 a year. Plus, you may need a lot of other medications to treat the symptoms of MS, like muscle spasms, nerve pain, and fatigue. You may need new glasses due to vision impairment. Many people need mobility aids. All of this costs money. Even with good insurance, there are a lot of out of pocket expenses. With bad insurance, the costs are overwhelming. With no insurance, you’re screwed.
Access to Quality Health Care
Even if you have good medical insurance, you need to have access to quality health care. I live near Seattle, a large city with several hospitals, a prestigious medical school, and several MS specialists. I am within 15 minutes of several excellent medical facilities, where I can get an MRI, blood work, or pick up prescriptions. I hear from people on MS forums who have to drive hours to get medical care, who don’t have MS specialists in their area, and who have to wait months to get an appointment. For people who can’t drive or rely on public transportation, accessing care is particularly difficult. In some countries, patients may not even have access to MRIs. Being able to get to knowledgeable doctors and medical care is a necessity.
Of course, being employed means getting a paycheck. And, money is important for fighting MS. The bigger the paycheck, the better. But, not all jobs are the same. A job with generous sick leave is important when you have an unpredictable, chronic illness. An understanding and accommodating employer is critical. There may be times you need to take off work, schedule medical appointments, work from home, or make other modifications. If your doctor is far away, you may have to take a day off every time you need to see your doctor. On a good year, that may be a couple visits; on a bad year, that could easily be twenty appointments or more. There are so many jobs without benefits or job security, where you could be fired if you miss work or need special accommodations.
MS attacks can be sudden and debilitating. You can be doing fine for weeks, months, or years, and then suddenly be unable to see or walk, have cognitive issues, or extreme fatigue where you cannot function. You may need someone to drive you to appointments, help you cook and clean your house, or run errands. Having friends and family nearby who are willing to jump in and help you is invaluable. Paying for rides, services, and delivery can be expensive. If you have a village to lean on, living with MS is more manageable.
Diet and Supplements
There are several recommendations for MS diets, vitamins, and supplements. Lifestyle changes are more affordable than drugs, safer, and something you can do on your own. So, many people take vitamins, experiment with supplements, and change their diets. I’ve switched to a mostly vegan diet, I buy organic when possible, and subscribe to an organic, vegan meal kit delivery service. I take the vitamins recommended by my doctor and some recommended by other MSers, vitamin B, D, a multi-vitamin, and magnesium. I’ve also experimented with several different supplements, from ashwagandha and lion’s mane to flax oil. I also tried CBD and marijuana. Some things seem to help, some don’t, some I like, some upset my stomach. I can afford to try all of these options and disregard what doesn’t work for me, but it’s been an expensive endeavor. For many people, vitamins, supplements, and an organic, whole-foods diet are not feasible.
MS is a scary roller-coaster ride under the best circumstances. It is unpredictable and effects everyone differently. Who knows where I’ll be in ten years? Some of our ability to fight and live with MS is out of our control. But, your ability to fight MS, manage your symptoms, and live as normal a life as possible should not depend on where you live, where you work, and what’s in your bank account.