There’s been a lot of discussion about the cost of RA treatments. It’s no secret that biologic medications run in the thousands of dollars. Add in physician and therapist appointments, lab tests, and radiology costs and the dollar amount can be monumental. While costs can be staggering, from an individual standpoint, there is help in the form of insurance, public assistance, and programs offered by drug manufacturers to help offset these costs. But RA steals something more precious than money – it steals time.
It’s estimated that RA sufferers have a lifespan that is 10 to 15 years less than a healthy individual. 1 To me, that’s a hard number to quantify because there are numerous factors that can impact your lifespan including environment, genetics, and lifestyle. To a great extent, I believe that life is lived moment-to-moment, day-by-day, so what concerns me, and I’m sure a lot of RA patients, is how much time RA steals from us on a daily basis.
I’ve always been a logistics/schedule kind of person and it really irritated me when I recently started on an infusion treatment plan because the infusions are given at my doctor’s office on a specific day of the week. No longer could I set my schedule around my wants/needs, I had to schedule the rest of my life (albeit once every six weeks) around the infusion schedule. And it takes a half day out of my life. Do an infusion every six weeks, and you have dedicated about 35 hours a year – or almost a full work week that’s gone.
About the same time I started the infusion treatments, I was offered an opportunity to participate in an RA-related activity which was very attractive to me, but I turned it down because it seems like I already spend an inordinate amount of time doing activities associated with RA. I’m treating it, writing about it, or associating some other activity (such as resting) with it. Sometimes it seems like my entire life has been consumed with having RA. This isn’t really the case. I have a busy, active life otherwise, but some days it seems I’m spending all my time related to RA.
The things listed above that cost money (treatments, labs, doctors, tests) also cost time. In addition, there is the amazing amount of time that is lost because people are simply unable to participate in activities because of RA. And for me, there is the additional time lost because I simply cannot do things as quickly as I used to. My errands, for example, take longer because I can’t get in and out of the car as quickly as I used to. If you add in all the time I’ve spent having and recovering from RA-related surgeries, I’ve lost months if not years of time.
As much or more of a money thief, RA is a time thief. And unfortunately, there is no insurance company to pay you back the time you lose or an assistance plan to put more hours back into your account. Until there is, we each need to guard against the time thief and burglar-proof our lives as much as possible: plan for activities, maintain our treatment and exercise programs so we feel the best we can, rest when we must, and take the best care of ourselves that we can so we minimize the impact of the disease.
And if the time thief ever goes on trial, I want to be on the jury.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?