Over the course of the past week, I’ve seen several interactions around trying new treatments and each has struck me. Normally, those of us with chronic illnesses might get pressure from our healthy friends and family to try new things. An article comes out about a new medication or a diet or gadget is supposed to “cure” our condition, and everyone sends us the link on social media. If we’re being generous, we attribute this to our loved ones being thoughtful and helpful. However, when it is done frequently, it can send the message we aren’t looking hard enough or trying hard enough to get better. Maybe if we just spent more time researching or tried this one thing, we’d finally get better. The reality is, we likely have tried the treatment already or, at minimum, we know about it and we’ve considered the pros and cons.
What’s struck me in the last week is the number of times a fellow chronically ill person has made a comment to the effect of “why wouldn’t you try new treatment X?” Of all the people who you think would understand, it seems like it would be your fellow sick and disabled peers, right? So maybe that is why it stings a little extra when we hear things like “everyone should give every treatment a try” or “you’ll regret it if you don’t try it” or “I try everything… you have to be brave in this game.” Granted all these interactions came up on Twitter where 280 characters limits how well you can express yourself sometimes, but I think it’s worth a reminder that even within the chronic illness community, people are different just like our reactions to treatments are different.
For example, some of us have a higher tolerance for disappointment, the sheer fatigue of trying new treatments, or the experience of bad side effects. Maybe some can shake all that off and start again. Others, myself included, cannot. That all relates to the cost of trying new treatments. It’s not just financial, but emotional and the cost of our time, etc. The energy to try each new treatment draws from a well that isn’t always easily refilled for some of us.
There can also be guilt and pressure. Our friends, family, health care providers, and disability reviewers measure our adherance and commitment to “getting better” by whether we’ve tried new treatments and stuck with them. And new treatments involve a non-zero amount of risk you have to weigh against all your other obligations. What if I feel worse? Will I still be able to work? Care for my kids? Maintain what little social life I still have? Etc. If you, like me, have any amount of anxiety, it can be hard to quiet all those “what ifs.”
We tend to get enough pressure from the outside world to try new things. Let’s be kind to our fellow chronically ill peers when they are considering trying something new. If they ask for advice, be mindful of how you respond. Even if our conditions are the same, our symptoms similar, we all come to the decision to start a new treatment from a different place. All things being equal, even if you wouldn’t make the same decision, be supportive. Gathering information should be an empowering part of the process, not a frustrating one.