Robbing Peter to Pay Paul

Growing up I used to hear this expression a lot from my singing teacher. It usually meant that I was doing something with my throat or voice which, while sounding good at the moment, could do long term damage to my vocal cords. I’ve been thinking about this expression a lot lately.

Ever since it came up during a discussion with friends. I was explaining how some of my medication I seemed to take in order to deal with the side effects of other medications. The conversation turned into a discussion of side effects and I mentioned how almost all of mine have increased risk of cancer listed. I joked that the meds I were taking risked me dying a slow and painful death, however I take them to avoid dying a slow and painful death now.

I joked that I’m robbing Peter to pay Paul.

And as I joked, I realized that there was truth there.

It’s the reality of chronic illness, of disability. So much of our day is about making decisions about how to manage our time and actions around our conditions and sometimes we have to make choices that harm us while they help us. This is especially true in the case of people who have multiple illnesses.

Not all of these exchanges are as severe as say risking cancer, but they all involve some level of exchange.

There are times where I choose to order fast food, using the overdraft protection on my account, in order to conserve my energy enough to be able to complete a paid task. Or to have enough energy to undertake a series of chores. I use money I don’t have in order to be able to make money, hopefully enough to pay off the amount borrowed for this purpose. I rob from myself in the hopes that I can pay myself.

Similarly, sometimes we have to use money we don’t really have to buy our uninsured medication. My mmj manages to be one of the only things that works consistently for my pain and nausea, and yet it is also the only one not covered by insurance. Being able to manage my symptoms is important, so instead of my payments on the credit card going to pay down the total balance owing, they end up going to pay for my meds. What choice do I have, when the alternative is being so sick as to be unable to do anything?

Sometimes my disabilities conflict and something that helps one thing might hurt another. The diet that is best for my Crohn’s or which leaves me feeling less sick is also one which does not help with weight loss. This paired with frequent prednisone prescriptions mean that I gain weight. Increased weight however puts more pressure on my arthritic joints. Eating to reduce the pain of Crohn’s can lead to eventual pain from my arthritis. I’m robbing my hips to pay my digestive system.

Last year, while I was dealing with root canal related pain, the medication I was taking to control pain and symptoms also irritated my Crohn’s. The pain in my jaw was too severe to leave undulled, and this one did not respond at all to MMJ. The only thing that worked was a combination of Tylenol and Aleve. The problem is that Aleve is an NSAID which causes my Crohn’s to flare. In order to treat the pain in my jaw, I had to cause myself abdominal cramping and pain, and even bleeding.

Sometimes the compromises we make are not for the sake of treating conditions but rather in the interest of self-care. In a world that doesn’t prioritize, or even at times recognize, the needs of people with disabilities, going out for any reason can be a drain on your personal resources. I don’t necessarily mean in the sense of financial resources, but rather your personal energy reserves, your mental health reserves, and so forth. This is the case whether you are going out for work, for errands, or enjoyment.

Some tasks are unavoidable, like grocery shopping and so forth. But what of social gatherings. Going to a dinner, a party, a movie, all of those require an output of energy, and in some cases more energy than we have that day. We are faced with a choice, borrow spoons from upcoming days and go, or conserve spoons and miss out on something we might have been looking forward too.

It may seem like the choice is obvious, but when you consider the social isolation imposed by our societies approach to disability, choosing to go may have as much benefit as staying behind. Imagine never being able to go out with friends, how that would make you feel. Never having social interaction of any kind. People are not built to handle complete isolation, and so going out can be just as much about fulfilling a human need as going grocery shopping would be.

But making that bargain, while the right choice for my mental health, can have long term impacts on my physical health. It can mean more days of pain, of nausea. It could mean a trip to the hospital. It could mean weeks of struggling with extreme exhaustion.

These are the decisions we already have to make personally, which is why it becomes so much more difficult when these choices have added external pressure.

So many decisions that bring the most anxiety are those surrounding money. This is no surprise when we live in a world where disability limits you to a life of struggling to make ends meet. Disability support payments are not based on accurate information regarding living expenses, and as a result, each month means making choices about which needs we meet that month. Do we buy slightly healthier food, or do we have gas for the month. Can we afford to buy a bus pass? Can we afford to put winter tires on the car? Can we afford to move or even can we afford to keep living here? Do we pay for internet so that we can work, or do we use that money to pay off debts? Can I finally afford to buy new shoes to replace the ones that are falling apart? Can I afford to buy a winter coat?

What’s worse, is that in addition to not being a realistic living wage, support payments often fail to take into account the increased expenses cause by disability. Joint pain can limit one’s ability to get around on one’s own. This means someone might be faces with higher than usual costs of taking a cab, or be faced with the expense of having to own a car. In addition mobility devices like canes, walkers, wheelchairs, can be prohibitively expensive but can take months to get through assistance programs.

Certain conditions require special diets, which almost always cost more money.

Certain conditions require assistive devices at home, which may be too expensive to get: things like supports for the bath and shower, like guardrails for beds.

Medication costs can skyrocket, even with the insurance provided by disability. Some medications are only partially covered, others like over the counter medication, are not covered at all. Not to mention related expenses like bandages, and ointments, or other symptom management remedies.

Some external pressures are less bureaucratic and capitalist in nature. Sometimes they come in the form of criticism from friends. About not being fun enough, not being loud enough, not going out enough, and about just not being enough. They come in the form of family shaming us over our self-care needs, be they quiet time alone, medication they disapprove of, or family rejecting us outright.

These external pressures each become another insistent Paul, begging to be paid from a purse that is nearly empty to begin with. No wonder we’re always broke.

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