My husband has multiple sclerosis. My biggest fear surrounding FIRE is health care. I fear that that if I retire before he is 65 then we won't be able to get good/affordable health care for him. I also fear that if I will work until he turns 65, him and I might not get to enjoy retirement they way we have always planned. We still have A LOT of years until FIRE but it is hard to calculate our number with the future of health care being so questionable right now, especially knowing we have a significant medical need for the rest of his life.
We currently practice a "put an acceptable % away for retirement but spend some money now to enjoy life while he is physically able" approach.
A healthy dose of perspective there! Best wishes to you both in your struggles. IT
This situation has been on my mind a lot the past few years. I have a couple confirmed autoimmune diseases (thankfully not any of the bad ones), but a lot of unexplained problems that indicate other possible autoimmune diseases as yet undiagnosed. I've been tested for MS several times over the years, so I've had to think in realistic terms about exactly what you and your husband are facing, as a possible future for me/us.
I think I have come to terms with the possibility of a disabling illness in my own future, and am saving accordingly (since LTC insurance is not an option for me). But it still is a big worry, given the uncertainty of health insurance. But I'm not nearly as prepared emotionally for the possibility of serious illness in DH, so that could throw me for a big loop were it to happen unexpectedly.
Health care costs are a really frightening x factor in FI (not so much RE for us). For these big autoimmune illnesses, and some of their close 'kin' diseases, drugs run >10K per MONTH without insurance. There is literally no way to plan for that. If your insurance won't cover it, you deteriorate and die. It's fucking appalling. We have a close friend in this situation right this second. So far, his insurance is refusing to cover his drugs (it's a specialty chemo cocktail used to treat some autoimmune diseases). They are floating the cost, expecting that with repeated appeals his insurance will cover them. He is expected to be on them for life, and they cost almost TRIPLE his gross income.
That kind of thing can leave me in a cold sweat of terror, especially given that as we've hit middle age, a frightening number of our friends have developed potentially catastrophically expensive health conditions.
Young people think they are bulletproof. But I can assure you, a healthy lifestyle is no protection from a lot of these health care catastrophes.
So health care will keep us working.
Also, family support issues, which we have also built into our ongoing expenses. Realistically though, we are only planning for everyday sort of support for family, not medical. We can barely adequately prepare for medical stuff for ourselves, let alone anyone else.