How My Disease Is Bankrupting My Family

To prepare for this possibility, we took our daughter off my health insurance and put her on my husband’s. It’s inferior to mine, but it will disassociate her from the disease, so she’s less likely to be rejected from health insurance based on her family history of MS.

Today, my daughter understands only that mommy has to give herself a shot every day, and I have to wear a special vest in the heat (it has cooling packets in it, to keep me from overheating and my symptoms from flaring). I’ve planned to talk to her about why her mother has a “special doctor for her brain” when she’s old enough to understand that she might inherit my need for said doctor. There’s a 9 to 10% chance that she’ll develop MS, compared to the average person’s .001% chance.

We’ve taken other preemptive measures, as well. For example, all of our retirement savings are now in my husband’s name, so they can’t be seized upon declaring bankruptcy. I also maintain a handful of high-limit credit cards with no balance, in case I ever have to pay for my medication in cash when I no longer have insurance to cover the cost.

And if and when our house exceeds $75,000 in equity and no longer qualifies for the California Homestead Exemption, a law that says it can’t be seized in bankruptcy as an asset), it will go into a trust in my husband’s name, and will eventually be given to our daughter. (For the record, we’ve been told by our accountant and by The National MS Society that these measures are legal.)

RELATED: Your Step-By-Step Guide to Getting Health Insurance

We plan not to have any more children, not only because I don’t want my daughter to have to help raise a sibling if I’m incapacitated, but because we’ll be best able to care for her financially as an only child.

We don’t want to file for bankruptcy, but it’s our safety net–our embarrassing, scary, horrible safety net.

It isn’t uncommon for married couples in our situation to get divorced and then continue living together in order to file a single income and be eligible for lower taxes and more benefits. My husband and I are prepared to do this.

Our Last Resort

I feel lucky that I was diagnosed so quickly. I feel lucky that those $120 syringes are slowing the progression of my disease.

But I’m also terrified.

Being diagnosed with MS feels like being hit by a train. I always point out that women are disproportionately susceptible to life-changing autoimmune diseases, and the best thing that you can do is to be prepared. Was I prepared? Of course not.

Some people who don’t understand the all-consuming, endless cost of a disease like MS think that we’re being flippant by even considering declaring bankruptcy. They truly don’t understand that the costs for my medication, my annual MRI, my rehabilitation therapy and the occasional hospitalization (I’ve been admitted twice so far for suspected strokes) are nearly double my mortgage.

We don’t want to file for bankruptcy, but it’s our safety net–our embarrassing, scary, horrible safety net. We want to pay our own way and continue to be the self-reliant family that we were in the past. It feels like the biggest failure in the world, after putting myself through college and doing everything right, to think that we might not be able to take care of ourselves.

Above all else, I’m fighting to preserve our home, my daughter’s college savings and our assets. We can’t risk losing everything to an illness that’s never going away.

Money isn’t always easy to talk about, and the author has shared details about her finances and her life. When commenting, please give her the respect due to a member of the LearnVest community. 

Love reading other people’s financial tales? Check out more great LearnVest-exclusive personal stories.

  • PhilChance

    Thank you so much for the story.  I think there are many people who have these problems but are afraid to tell their stories.  I wonder if the Affordable Health Care Act will help you?  It is sad that you might have to divorce to get help but I’ve heard of others doing the same. 

    It also brings up another good point and that is having children.  I think you are being very responsible in your decision to not have more children.  I wonder if we will ever get to a point where we can have a test pre conception and see what we are likely to develop.  I think many people would plan their families differently.

  • Ffsteveff

    Please know that in this current economic uncertainty, mainy hardworking people will be declaring bankruptcy for many reasons.  I hope that your MS will progress slowly, and you will have many wonderful years with your family.

  • Redd

    For what it’s worth, I’ve had MS for 21 years (and probably 4-8 years before that) and am still entirely intact.  Although I have a “flare” (relapse/exacerbation) every couple of years, I always have full recovery.  I have been able (most fortunately) to continue to work part-time while receiving partial disability payments. 

    Since I’ve not had any clearcut loss of function for ten years, I now fall into the category known as “benign MS”  with an excellent prognosis — less than a 5% chance of ending up in a wheelchair, etc.

    In addition, the chance of anybody with MS going blind is in the single digits (I’m not sure sure where you got the 80% number but it’s erroneous), and since I haven’t had any eye symptoms since diagnosis, my chances for anything going bad with my eyes are even lower.

    So just a different point of view:  there’s MS, and then there’s MS.  Let’s hope yours is like mine!

  • ROZA

    I read when I read your post; I have MS since 13 years and due to a firing at my work(cause of my desease) I had to claim banckrupcy. I am finally arriving to finish paying for my debt(in france you have to pay depending on your situation) I am lucky I don’t have to pay for my medecine cause I KNOW HOW PRICEY IT IS; Good luck to you and keep hope

    • roza lee

      I meant I cried    sorry

  • Guest

    There is a very big assumption that people who file bankruptcy and use assistance are “mooching” or feel “entitled” by those who don’t know or care to know what is really going on. Those people should be ashamed for judging and feel lucky that they have their health. NO ONE can prepare for the financial ruin of a major illness and the health insurance nightmares that come with it.

    Your story brought tears to my eyes. I watched my parents go from comfortable to dire straights and file bankruptcy and apply for assistance when my mother fell ill. Multiple hospitalizations with long stays added up and they couldn’t afford to pay for it, despite my dad’s decent salary at the time. She couldn’t work until she recovered and my dad had to take over all living expenses plus all of the new ones. She was eventually given the correct diagnosis and treated, and resumed a somewhat normal life afterward, but like you, has to take expensive medication for the rest of her life.

    I too can relate. My family had savings, plans, budgets, etc. We were able to save enough and adjust our expenses so that I could stay at home to raise our children. After my 2nd child was born, an extremely rare but extremely serious (fatal to 1/3 of mothers who experience it) complication occurred. There was a hospitalization that included ICU, lots of imaging tests, labs, and medications. A genetic mutation was discovered through that testing that put me at risk for it, but it’s not something that ever would have been tested if this didn’t happen. After being released from the hospital, there were frequent doctor visits with more testing and medications. It adds up SO quickly and can ruin you in no time! It’s horrible! We had an independent insurance plan that wouldn’t renew us because of this and couldn’t get anyone else to cover us unless we paid for sub-par coverage at a higher cost per month than our mortgage, so we ended up un-insured. I went back to work less than a year later because we’d used up all of our savings and the medical bills kept coming in. We were fortunate that I was able to quickly find a job that offered group coverage after a few months of employment.

    Even though I fully recovered, the risk of it happening again will never go away. Our dreams of starting our own business have been changed. One of us will always have to be an employee of a big company that offers insurance, at least until the new laws go into effect, becuase insurance companies look at my history and see the dollar signs. That means they either deny us altogether or quote us extremely high, unaffordable rates. I feel like we’re being discriminated, because like race or gender, you can’t control what your genetics will do to your health.

  • Moonpiewoman

    The most difficult thing I have found about this condition, as well as others; is that one has to ACTUALLY have the needed ENERGY to fight the good fight! Providers; basically all providers, treat us as if we are cogs in THEIR wheel. I’m not judging them, I’m beyond that point. The stories I could tell… The lower half of my face is almost completely numb, and I can’t smile! Or I would! If we don’t find a way to make things happen (I live alone) it doesn’t get done. I can’t afford to pay a private, medical case manager. I live on SSDI. I was able to work part time, until this fall… I still volunteer at a thrift store. I can stay on my feet, by holding on to the shopping carts, so I put out merchandise. It cracks me up, when people ask me if I am “afraid I will become too dependent on my cane! The amount that I receive each month, disqualifies me from the “extra help”, from the state, OR the drug companies. I am about 150.00 “over”..I finally got a copy of the book (at a thrift store), “How your Doctor thinks.” It is an excellent read’ although it confirmed my worst fears. I also recommend the M.S. newsletter, at about.com. The admin. there finally got diagnosed with M.S. after many years.  It has really helped me; to interact with members there in the forums. I hold an advanced degree and worked in my field for over 25 years. Thanks for listening! The woman who’s article we are all responding to really is doing EVERYTHING she should be doing, in my book! I don’t know her, but I am proud of her!

  • Sailor_solaris66

    Thank you for sharing. I’ve been in a somewhat scary place as well. A year ago I was diagnosed with Type 1 diabetes (even though I worked out and had a relatively heathly diet). The first thing I thought was “how much is this going to cost me?” The same week, my employers decided they couldn’t afford to cover our insurance premiums and we would have to foot some of the bill.  I’ve managed it well and try to find various ways to cut my healthcare costs like getting gift cards for my pharmacy.

  • Marawash

    Thank you for sharing your story with us. When disease hits a family, their financial health suffers as well. I am glad that you and your husband are being proactive and taking the necessary steps to provide a great future for your daughter.

  • Francesca Petrizzo

    Thank you very much for sharing your storyì I don’t think anyone who has an ounce of sense and has read this would ever believe you are flippant for considering the possibility of divorce for financial reasons or bankruptcy. For what it’s worth, I believe that by the very action of planning carefully for the worst you are showing that you are a responsible, hard-working, and above all brave person. I hope your disease stays the slowest and least obtrusive it possibly can. Good luck.

  • Ryan M. Kealy

    I hate hearing these stories. My wife passed away from Hodgkin’s this past year. Even with “good” health insurance, I still owe 40-ish thousand dollars to various health agencies. Even though I have a good income, by the time I pay all of her medical bills each month, there really isn’t much left.

    The moral of the story is this:
    Don’t get sick in America. Even with health insurance, you’re pretty much fucked.