Would You Rather....?

 

Perhaps everyone has played this game in one form or another. In the informal children's version of Would You Rather...? , players ask each other binary choice questions beginning with a scripted question, "Would you rather..." and ending with two ridiculous and sometimes disgusting choices. One child might ask another, "Would you rather have feet for hands or an ear where your nose is?" 

Silly questions are probably easier to answer because they are impossible to experience and what's more, we don't have to experience the consequences of our choices. We can safely answer questions like, "Would you rather eat belly button lint or ear wax?" without real life consequences. 

Sometimes, the questions, choices, and answers do have real life consequences especially in the context of rheumatoid arthritis or other chronic condition.

Try answering as a person with a chronic condition that forces you to choose one or the other.

Would you rather...

use your limited physical energy for personal care or grocery shopping?

You have to choose one. It's a real choice sometimes. There simply is not enough physical energy to do both.

Would you rather... 

have permanent eye damage or permanent joint damage?

Sure this isn't a real choice, because you have no way of knowing before taking a medication if the side effects will result in permanent eye damage. Still, you have to choose between one possible awful side effect and the probably effect of the known chronic illness.

Would you rather... 

take daily medication that causes constant nausea or go without the medication and have limited movement?

Would you rather...

have a good night of sleep or a good day of work?

If you haven't made any choices yet, I get it. It's difficult, but only if you stop to ponder the consequences. 

Too often, too regularly, people with chronic conditions are asked to make these weirdly acceptable binary choices.

Would you rather...

Continue to suffer chronic pain or take a medication that is almost guaranteed to add 30 pounds to the scale?

Would you rather...

Continue on the medication that makes your hair fall out or take a medication that produces instant full-body psoriasis?

Sure the choices aren't even that stark. We don't know that these are the side effects before we take the medications. As patients, we may have access to the list of possible side effects, but we don't know how each of our bodies will react to the medications until we make the choice to take them.

Wait. Doesn't that actually make the "would you rather game" worse? 

Patients are sometimes aware of the possible side effects, but awareness usually takes the form of a list. The list is divided into "usual" or "common" and "rare" but then so many catch-all terms are added to the list. We don't actually know which side effects we will have if any. Further, we don't know the severity of the side effects. 

The choices we have for management of chronic conditions, like rheumatoid arthritis, are actually more fantastical than the childhood version of the question game. With older and cheaper medications, information is online about possible side effects and it takes the form of the long and segmented list. Newer and more expensive medications may have an actual binder of information, with tab dividers, that accompanies even the thought of taking it. An 83-page Trapper Keeper-like binder of dense content with a thick, pull-out section at the back, accompanies a possible Enbrel subscription. 

Now take all of the information in the binder, understand what it says, understand how it may affect you, your life, the lives of the people around you, and your finances, and choose it. Or not. You still have the other medications with brutal side effects.

You could go back to the drug used for chemotherapy. It's not really chemotherapy at least according to some people. It's not chemo strength, but it is definitely chemotherapy. Side effects include but are not limited to nausea, hair loss, and other cringeworthy outcomes, but this gold standard treatment does reduce the pain somewhat.

You could go back to the other medication that you took when the not-chemo medication didn't work as well as expected. Those side effects were different, but still untenable.

You could take another medication actually developed for another condition. No one know why it works on rheumatoid arthritis, but it seems to reduce inflammation. You can only take it for a fixed amount of time though due to the risk of eye damage. 

Over 100 gene mutations have been identified to cause rheumatoid arthritis and the same handful of treatments are used on all of them. How is it possible that we cannot match a cause and a medication better than using a 50+ year old chemotherapy drug as first-line, gold standard treatment for every person with rheumatoid arthritis?

Which would you rather have?

Go ahead. 

Make a choice.