My husband and I are very good with our money, and we have been privileged enough to be able to spend below our means throughout our marriage. Our standard practice is to view purchases in terms of needs versus wants, and this line of thinking has been helpful in making certain financial decisions. We have had to be more cautious about spending over the last 20+ years than most people we know due to the hidden financial devastation that comes with complex chronic illness. Robert Groysman, MD, describes the financial devastation in relation to managing Long COVID for as little as 6 months, but his description can be applied to most complex chronic illnesses and multiplied across many years:
What is judged as overspending to people on the outside is my husband and me doing whatever we need to do to try to keep me alive. We are often asked why we don’t just go to doctors who accept insurance. The answer is that we would if we could, and we do so when we can. However, most standard blood tests are built to detect advanced disease: organ damage, clear abnormalities, and values far outside the normal range. While some of these tests have been helpful for me more recently, I have known that there are health issues that go beyond this standard type of testing for 20+ years. The only chance I have of getting quality medical care at this point in my journey is if I see doctors who use direct pay and don’t have to fit their medical care inside of a broken medical insurance model. While Dr. Groysman is not my doctor, here is his explanation for why he believes it is unethical to try to treat complex chronic illnesses using the current medical insurance system in our country:
In the last few years, my husband and I have had to be even more focused on financial needs versus financial wants due to the skyrocketing trajectory of my medical expenses. It is not lost on me why many people in this country die because they are unable to pay for the medical care they need. We are fortunate that we are currently able to afford my medical care (including the majority of it that is not covered by medical insurance), and we don’t take this privilege for granted. However, depending on many different variables, including how long I live and the severity of my health situation, this may not be the case for the duration of my life.
Given this information, it might come as a surprise to some that my husband and I are thinking about building a new house. We have been waffling back and forth about building a new house for several years. As we all know, now is *not* the best time to build a house in this country. The interest rates are way higher than they were when we bought our current house. In addition, house prices in our area are much more expensive than they were a few years ago.
So, why are we thinking about building a new house? First, we want a house that has the primary bedroom on the main level in case my health gets worse and my mobility is reduced. Also, we want to make this move before we are priced out of our area. We are in a slightly different financial situation than we were a few years ago, and we are trying to think critically about our next move. In addition, if we are going to continue to need to spend a majority of our time at home due to my health situation and inability to travel, we might as well make our living situation as enjoyable as possible.
Since we technically don’t *need* to move right now, my husband and I are struggling to think about what we want. Eventually, this move may be a need, and we are trying to figure it out before it becomes a need that requires rushed decisions. Those who know the details of our situation are encouraging us to switch our thinking to what we need AND want in our next home versus what we simply need. It has been comical watching my husband and I try to think in terms of both wants and needs instead of just needs.
The most difficult part of all of this is that there is so much uncertainty concerning my medical expenses. We have no way of knowing what is coming, and obviously, my medical needs are a priority over most other aspects of our life. We can discuss and make plans with our financial advisor all day long, and we can look at as many “what-ifs” with him as we can, but the bottom line is that we will probably always have a large amount of financial uncertainty in our life due to variables beyond our control. We really can’t make financial decisions that are as educated as we would like them to be given all of the variables involved. And, since my health is the cause of most of those variables, I often feel like a burden. I am fortunate to have a husband who doesn’t see me as a burden and frequently says, “The only thing that truly matters is that you are alive. Our first priority is your health. The financial strain we encounter as a result of trying to keep you alive is worth it.” However, the financial burden still feels heavy on most days.
Another difficult part of the new home buying/building process is finding a builder who will use building materials that have the best chance of being accepted by my immune system. There are so many chemicals that are currently used in building materials for houses, and most of these chemicals are of little concern to the general population. However, I am not part of the general population, so we need to be as proactive as possible. And, we have been warned by home environmental experts we have utilized in the past that current building materials used for building new homes could cause an immune reaction in me even if we are proactive.
On top of all of this, there is always a chance that my health will decline to a point that I am no longer able to work. If this happens, we will need to seek out a different living situation altogether.
There is so much to think about, but what I have learned from living alongside so much uncertainty over the years is that we just have to do the best we can with the information we have available to us at the time.
(credit: Tiny Buddha on IG)
My husband and I can always make a different decision at a later date if the situation calls for it. When the uncertainty in our life feels heavy, we regularly remind each other that we only need to make the next right decision. And, just like we have always done, we will make the next right decision together as a team.
Brutal. The hidden financial devastation that comes with complex chronic illnesses. Living alongside so much uncertainty.
Beautiful. Thinking about both wants and needs. Being comfortable with uncertainty. Making the next right decision together as a team.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 