More: Tough Choices You Face When Chronically Ill or in Pain
Readers add to the list of tough choices for those with health problems.
Posted Mar 10, 2013
On January 28th, I posted a piece called “5 Tough Choices You Face When Chronically Ill or in Pain.” I wrote it from my personal experience but was amazed to discover how many of you said it applied to you too. It seems as if we all face the same tough choices.
In this piece, I want to add to the list by sharing some of the feedback I received. That feedback resonated with me the way my first piece resonated with all of you. I found myself saying, “That’s me too!” And so, without further ado, here are MORE tough choices:
1. Do we ask for help with something we can do even though it will be difficult and may exacerbate our symptoms OR do “save up” our requests for help and use them only when there’s something that we absolutely cannot do?
People who raised this expressed two concerns. First, they don’t want to overburden their caregivers and other helpers. This concern cuts in favor of going ahead and doing what we can do even if there may be “payback” later.
But the second concern cuts in favor of asking for help even if we don’t absolutely need it. The concern is that, if others see us doing anything, they’re likely to assume we can do everything. “You went out to lunch, so I don't see why you can't go away for the weekend.” Knowing that this is the type of reaction we’re likely to elicit if we push ourselves to do even the smallest tasks leads us wonder if it wouldn’t be better to always ask for help.
I have this type of thing happen to me all the time. If people see me doing anything—even just sitting at our local espresso place—they assume I can do everything that others around me can do. If you remember my last piece, “What Kind of Thinker Are You?” you could say we’re victims of divergent thinking. That is, people assume that only one of two options applies to us: either we're sick or we’re healthy. This type of misunderstanding on the part of others is one of the reasons why the question of when to ask for help is such a tough one.
2. Do we stay with the local doctor who’s treated us for years but isn’t really helping OR to we go to the “expert” who is expensive and often hours away?
I've had to deal with this tough choice for almost 12 years now and I know some of you have been dealing with it for longer than that. We have to think about the money involved, the energy required to begin yet another new “doctor relationship,” whether we can handle another disappointment if it doesn’t work out. The list could go on.
3. Do we take pain medication to relieve disabling pain OR do we stoically put up with the pain because the medication makes us groggy and less functional?
I hate the side effects of pain medication, but sometimes it’s a tough choice: unremitting pain or a mind like silly putty. Neither choice is satisfactory but we still have to make it. Which choice we make on any given day may depend on several factors: what our “have to’s” look like, whether we’ll be with other people, etc.
Going along with this is the question of how to allocate pain medication if we’re only given a certain amount each month. Here’s what Carol, who has chronic migraines, said about this tough choice:
Insurance companies limit the amount of pain medication they will give us per month. The problem is that if you get 15-18 migraines per month as I do, the nine pills allowed must be doled out very carefully. So not only do I have a migraine, I have to assess it: maybe it’s not so bad that I need to medicate…but what if it gets worse? And how many pills have I already taken this month? If I take more than four by mid-month, I won’t have enough to get through to the end…but if I let it get too bad, then the medication doesn’t work as well and I am down an out for a couple of days.
4. How do we spend the little energy we have? Do we use it to do necessary things like washing the dishes OR do we use it to do something that’s fun?
Tasks pile up for us, from the dishes to the laundry; but it's also important to try and enjoy ourselves. It's always a tough choice to decide how to spend what little precious energy we have.
5. When people ask how we are, do we respond truthfully (“I’ve been bedbound all week”) and risk being judged negatively by them or being subjected to a lecture on what we should be doing OR do we say, “I’m fine,” and risk passing up a genuine opportunity to connect with someone else or, even worse, wind up feeling like we’ve betrayed ourselves?
This is similar to the tough choice I mentioned in the first piece: Do we talk openly about our health problems or do we keep them private? I raise it again because so many of you commented that you face the same dilemma…and how neither choice is satisfying. We want to share our lives with friends and family, but when our lives are centered around managing chronic pain or illness, not only may that not be what loved ones want to hear about, but it’s not what we always want talk about! Judith commented: “I wrack my brain sometimes trying to find something non-health related I can talk about. Some anecdote that doesn’t start with ‘When I was at the doctor…’” Judith said she said she found this “managing” of conversations to be utterly exhausting. I know how she feels.
I’ll close with a comment left by Martha on the first "tough choices" piece. She said that as she looked over my list of “tough choices” and answered them for herself, she realized that her answers would change over time…and then change again. She said: “So I will ask myself these same question a few times each year, look at any changes in my situation and adjust my answers accordingly.” Thank you for that wise counsel, Martha.
© 2013 Toni Bernhard. Thank you for reading my work. I'm the author of four books:
How to Be Sick: Your Pocket Companion (for those who've read How to Be Sick and for those who haven't). Available May 2020
All of my books are available in audio format from Amazon, audible.com, and iTunes.
Visit www.tonibernhard.com for more information and buying options.