I was so sick my first day on the job after graduate school. I dragged myself from our apartment in Brooklyn to my office in Soho everyday. I followed my boss around the city as we checked in on various projects under construction. And in the evening I sat in my bed while the visiting nurse gave me IV steroids to calm the Multiple Sclerosis causing my vision loss, leg weakness, neurologic pain and extreme fatigue. I was just starting my career and no one at work knew I was sick.

It was a long time before I had any sense of what the trajectory of MS would be for me. Some people have relapsing MS that comes and goes and others have progressive MS that just keeps getting worse quickly. After 10 years the doctors were able to tell me my prognosis was good, which only meant that I would probably not die from it. But disability of some sort was nonetheless guaranteed. Even with disease modifying drugs the prognosis for MS is a steady decline over time, it was just a matter of how steep.

My husband and I both applied for life and disability insurance when we got married. He was able to get $2 million dollars of life insurance for the same price as my $50 thousand dollar policy. He was given disability insurance and I was was flat out denied because of course they knew I would need it.

I struggled to work all of those years. We had our own business for most of it which gave me the flexibility I needed along with the stresses of being a business owner. I periodically asked my old MS doc about getting government disability and she told me repeatedly it was really hard to get with MS. So I let it go. When we went to Norway (where I was born and have dual citizenship) I met people people who were on disability there, one for MS and two others for burnout and boy was I jealous! In my mind I thought I could always move back if it got too tough, but now I know I would not qualify because I had not worked there long enough.

So when I finally admitted that I was too sick to work I had no backup plan and was in a complete panic. I have been working my whole life; summer jobs since I was 13, waitressing and internships in college. My career as an architect was very important me and I did not identify as a wife and mother so the idea of being dependent on my husband was horrible. The panic had me plotting our move back to Norway where at least I would have guaranteed health insurance. And as a few of my Instagram posts went viral, I thought maybe I could support myself as an influencer but turns out that is much easier said than done.

When my current Neurologist suggested I apply for disability I told him that I thought that was futile based on my old doc’s guidance. Then I remembered that our company had a private life and disability policy that covered everyone in the company regardless of medical history. I myself had signed off on the policy several years back but my brain was so fried at this point that I had forgotten all about it. I was skeptical that it was going to work given what I knew about the insurance industry and all those things I had been told over the years but it was worth a shot. My Neurologist suggested a lawyer that some of his patients worked with and together with my husband we submitted a claim.

I was utterly floored when they approved me for benefits equaling 60% of my salary. I was relieved, ecstatic and also validated in some way. Nobody really gets how sick I am; not my husband, not my kids, not my parents, not even my doctor. I put on a good face, I try to stay positive and contribute as best I can but it is a huge ball and chain around my foot. I have dragged that weight for 25 years while working and having a family and now I could lighten some of the load while still maintaining financial independence.

I was initially approved for 2 years subject to reevaluation and this spring I got wind they were trying to deny my future coverage. Even if I could not work as an architect I could probably do something, they suggested. Honestly, I wish that were true because it sucks to be tired all the time. I don’t have more than 4 active hours in a day and in that time I have to make myself breakfast and lunch, make dinner for the family, get dressed, and then either exercise, take a shower, do laundry, go food shopping, take the kids to their appointments or work on a hobby (including writing this). These are what the insurance industry calls the activities of daily life and that is all I have battery enough for. If I gave those 4 hours to someone else I would not be able to function.

The insurance company agreed and I am now approved for benefits until I am 65, assuming I am still disabled. But given the general course of MS and the fact that there is no cure I wouldn’t hold my breath if I were them.

I wish I was clever enough to have planned this all along, that of course I purchased a group disability policy for my company to take care of me if I were to need it. Maybe I had that thought once but it was gone when my brain was in a delirious fog from the the disease that was disabling me in the first place.

Remember the government disability I mentioned earlier? My insurer requires that I apply for Social Security Disability Insurance to offset their payments and they even paid for assistance with the application because it is in their interest. The paperwork is substantial, and notoriously tricky to get right, and even with a disability lawyer filing it for me I was denied. Appealing is apparently par for the course and where I live in Massachusetts the typical approval timeline is 2 years including appeals, but it is probably longer in other states. I have heard horror stories of people going broke and even dying before they get approved for disability. The current Concretional Budget Reconciliation Bill (aka the Big Beautiful Bill) will make paperwork even more onerous as an intentional strategy to prevent even more people from getting benefits. When I was applying I was so sick that I could not physically or mentally fill out the application and luckily had my husband and lawyer do it for me. Most people don’t have that kind of help.

In the meantime, the private disability payments are great and I am so lucky to have them but the Social Security Disability Insurance unlocks one benefit, critical for everyone, but especially those with a chronic illness – Medicare. When you are approved for SSDI you are also automatically approved for Medicare. As it stands now I rely on my husband’s insurance through his job and if he were laid off, or worse, then I would have nothing and neither would my kids. We would probably move to Norway if that happened but that is not an option for others.

For more than 20 years I have worried about being disabled or without health insurance in the US. I have paid my FICA taxes for social security and disability benefits that I was told never to rely on. Private insurance came through for me this time but they are in the business of making money, not helping people, so I consider my case the exception not the rule. Insurance companies regularly deny people in all kinds of sectors, health, homeowners, etc., so privatization is not the solution.

The existential stress of not having a safety net is significant and fuels the hustle culture that kept me working well beyond the point I should have. And this is all while knowing that many other countries like Norway have these protections in place so people do not have to worry. It’s not a glitch in the American system, it is a feature keeping us fueling the capitalist system while be stressed, sick, and unable to do anything about it.