Financial Struggles with NMOSD

I was watching an interview and this lady said, “If you have money you can afford to fall sick." And I could not agree more with this statement. I mean, you have the ability to work and you can earn an income. So ‘health is wealth’ has a literal meaning in today’s world.

I got married for the second time in 2020. My then-husband was earning well to the point the family asked me if I’d be happy to be the homemaker. I said yes, considering I had been working for over 20 years - but I was unaware of what was in store for me just a year later. I mean who prepares you for chronic illness like NMOSD?

When it comes to money

When it comes to money, I never was bothered by it. Not because I was rich, but because I was happy with whatever I earned, I had and saved. I had a couple of surgeries before, the costs of which were covered by my office. I lost one eye within 1 year of marriage, but still, all was okay. Life was good.

And then my NMOSD diagnosis happened and slowly things started to fall apart. I mean who prepares for a sudden catastrophe?

Medical expenses start to pile up

I was in the ICU for 7 days and then another 4 days in the general ward. After getting discharged the first thing my husband and his family told me was the detailed bill. That was the time I realized how bad things were going to get from now on. He would yell at me post every doctor's visit (mainly because money was being shelled out of his pocket) and this started happening for any kind of expenses, even the ones spent on food.

I realized half the reason people ghosted me was because I might ask for money from them. My relatives when they came to know about my NMOSD, told me that it was better to stay in a volatile situation, because my husband had the means to take care of my finances. WOW. On the other hand, my in-laws instigated him to dump me as I was "completely useless" and a financial burden. Which eventually happened.

Insurance woes

Sadly, in India, the government would give you a disability card, but there is no disability pension. So the cost of living with NMOSD or any disease becomes bad. This worsens if you don’t have medical insurance and a job. I tried getting one, but every medical insurance refused stating never heard of illnesses. The ones that agreed were happy to take the premium, but then I had to wait for 3 years, and post which it will be subject to approval the chances of which are 10 percent.

So right now I don’t have any medical insurance and the cost of medications and tests is humongous.

Cutting costs

One thing that came as a savior during all this time was sharing my experience and advocacy. I was lucky enough to get a bit of income this way, and started saving the money that I earned.

But I started to think about where could I do cost-cutting. Especially now that I had decided to leave that narcissist. The first thing I did, was ask my mum if I could move in with her to save rent. Which she agreed to. For the very initial phase, she said she would be happy to bear our expenses too.

I then became a bargain hunter. I stopped shopping from overpriced stores or any shop that in my books was expensive and instead used online platforms for everything. I looked for sale days, or waited for the item to be marked as “only a few left”. I discussed with my daughter how she could recycle stuff and use it again. I started avoiding social engagements that I knew would cost me money even if that made me look bad.

I made a 360 change from an impulsive buyer to a cautious buyer. I analyzed whether I wanted a certain thing or if I even needed it. We also started cutting back on junk food. This not only saved money but made our health better. I took my daughter on fun dates but chose my venue wisely so that she would enjoy it and it would not be that heavy on my pocket. Another thing my mum told me was to make a fixed deposit in the bank of whatever I saved and use the interest money for the expenses. Even this helped big time.

Finances and uncertainty

I know I have less money in my pocket, and with NMOSD the uncertainty of sudden relapse is high, so the financial burden is also high. And I have my days that I worry sick and have the worst panic attacks. I know there are so many others who are in the same boat as me. There is social isolation, single parents, and carers. The finances are tight, but I am getting there.