The Financial Stress of Multiple Sclerosis
I can remember walking to the mailbox with a feeling of curiosity, wondering what might be waiting for me there. Sometimes even excitement! “Oh I hope that package came today!” Do you remember that? Wow, I miss that… Now I only walk to the mailbox with a minor feeling of dread… I already know what is in there. Bills, collection notices, Social Security paperwork, stuff like that. But the bills, they just keep coming! I seriously find myself thinking that the amount of bills I get are disproportionate to the amount of services I use, like, “I only bought 3 things yet I have 12 bills in the mail!”. It has gotten to the point where I don’t even open them anymore, I have a large plastic bin that they all just get tossed in; I can’t pay them all, I don’t even have a steady income so why bother? Being “sick” is just too expensive…
Expenses, expenses, expenses
When you really balance out how much I owe to either my current medical clinic, my previous medical clinics, my specialty pharmacy, different infusion services I have used, my many hospital stays, my lab work, medical collection agencies, etc, it becomes crystal clear that I have way more money in need of going out than I have coming in. And of course, this is just a few examples of the cost of living with my multiple sclerosis; plus, I still have all sorts of regular, non-MS related bills as we all do. It’s overwhelming! I feel like I am drowning in debt! How does anyone afford this life? Especially someone who has no spouse to turn to for help and does not even receive Social Security benefits despite the fact that I physically cannot go out and work a job? I can only think of that famous chocolate factory scene from “I love Lucy” where the chocolates coming out on the conveyor belt for sorting start coming out too fast to possibly sort them and so they start eating them. That is how I feel about my medical bills. I can’t keep up.
Losing much-needed services
But then it gets worse! People start cutting you off from services you need to deal with and treat your MS! For example, I am currently blocked from using any services at my medical clinic like doing labs or even scheduling an appointment to see my neurologist despite the fact that I am trying to make payments towards my balance that continues to grow at an alarming rate! They don’t care, they say it’s not enough money, so basically, there is a monetary value on my health and well-being! Granted my neurologist, who is awesome, said to come in but instead of checking in at the front desk just to head straight back to his office and he will see me, but still… It is very depressing and stressful to be trying as hard as you can but still, no one wants to work with you, your best is just not enough, all that matters is the mighty dollar. Now my situation is a little ridiculous (and yes, in response to what I know many of you are thinking, it looks to be legal because it’s a private medical facility not run by the government), but I know most of us all feel the same way about the financial life MS stick us with; hopeless. Getting the medication or treatment we need is not about how bad we need it, it’s about how much money we have. It seems so unfair that how well you can treat your MS (or any other disease really) depends on your wealth! Because of this, we do not all have the same opportunities and that makes me both sad and mad.
More to stress about than just your health
So rather than being able to focus on just getting healthy, we often have to deal with the stress of bills, trying to figure out how we will be able to afford certain things, spending hours waiting on hold trying to talk to someone about making a payment so you can order the medication your doctor prescribed you, constantly being bombarded by people calling you to basically demand something from you that you don’t have (but when you need something from them they are all of a sudden unreachable) and of course the never ending tsunami of bills and collection notices. People talk about celebrities with MS and how horrible it is but honestly? I am sorry to say, they have no idea what MS is like for people in the real world. They can get the best medication, they can hire a personal chef, a personal trainer, a massage therapist, they can hop on a jet and fly to another country to have a treatment done that we don’t do here in the states and they can do it the very night they learn about it. Things most of us only dream about or spend years raising money for. Just get up and go like it’s a trip to the store to pick up milk. Their doctors are probably even on call! They have no idea what sort of stress the financial life of MS can cause. Of course this is just an assumption… I often wonder how well I would be doing today if I never had to deal with all that financial stress over the years because as we should all know, stress is bad for MS.
How much financial stress does multiple sclerosis cause you? How much of an obstacle can the cost of living with MS be for you?
How many specialists did you see before finding "The One"?