“Find Joy in Your Pain,” But is it Wrong to be Okay with Not Being Okay Some Days?

Question: I was reading a column on a popular disability website recently that basically advised people with disabilities to “find joy in their pain.” I do mostly try to take an optimistic view of things, but there are days where I have a lot of physical pain, it’s hard to get around, and, well, I find it pretty hard to find the joy in that. I can also feel it drag my close family members down (even if they’d never blame me for it). Is it wrong on those days to just be okay with not being okay? Should I try harder so it doesn’t affect those around me? Please advise.

Response from Stephanie T. Machell, PsyD: Being told to find “joy” in pain smacks of the New Age version of the moral model of disability. The person with a disability who is unable to do so may be left feeling ashamed, guilty and/or generally flawed. For polio survivors who were indoctrinated in the importance of overcoming and passing as much as was possible, this feels especially egregious and damaging.

Being optimistic and positive is different from being joyful. “Joyful” is an emotion and emotions change. No one is joyful all the time. Optimism is a personality trait that, while usually stable, can change with time and circumstances. While you may ordinarily be an optimistic upbeat person, being in pain can make it difficult to feel positive about anything, or even to remember what it’s like to be pain-free.

You don’t intend to drag your family down. But emotions are contagious. Pretending you’re joyful may fool acquaintances, but close family will see through the act. Knowing you feel the need to protect them from your true feelings may make your family members feel worse. Also, it may not be your attitude that drags them down. Knowing someone they care about is in pain can evoke feelings of helplessness and discouragement.

When you’re having a bad day, it’s okay to not be okay. It can be liberating to let go of the need to pretend that you feel better than you do. It’s also okay to let others know you’re not feeling okay, especially if it helps reassure them that it’s not about them, or if there is something concrete you can ask them to do that might help (including leaving you alone).

There’s a difference between owning that you’re not okay and becoming focused on it to the exclusion of everything else. On a truly bad day, this may be unavoidable. Ruminating and complaining about everything you can’t do may provide some temporary relief. But staying focused on your pain will make your bad day worse. Unless you’re having the type of pain that only improves when you lie still in a darkened room, it’s better to do something that can (at least temporarily) distract you from how awful you feel. Seeing you taking good care of yourself and enjoying something may have the added benefit of reducing your family members’ concerns.

Response from Rhoda Olkin, PhD: I think the advice about finding “joy in your pain” could come from someone who does not live with chronic pain. It feels patronizing and blaming if you are somehow feeling less than optimum when dealing with pain.

At the same time, we all know we don’t want pain to be the principal driver of our daily lives. So, let’s tackle the issue of chronic pain. First, how do we assess our own level of pain? Medical professionals have adopted the one-to-ten scale, with ten being the most pain you can imagine. Most people I know hate this scale, and, frankly, I find it ridiculous. A Novocain shot at the dentist hurts like crazy; but it’s very brief, so that makes it tolerable. But a mild toothache that lasts for days and keeps you up at night might be a three to begin with, but after a few days feels less tolerable, even if the absolute pain level has not increased. So we see that pain has many dimensions: severity level, duration, constancy or intermittent, location (eye pain might be worse than toe pain), and type (stabbing, sharp, burning, etc.).

There are other ways to measure pain. Consider the following scale.

• Level One: Pain is there but out of my conscious awareness unless I stop and focus on it. But I could then carry on with my day, and the pain would recede from consciousness again.
• Level Two: Pain is still out of awareness, but it is affecting my mood and behavior. My children might say, “Mom, you’re crabby. Are you in pain?” And then suddenly I would be aware that I have been. They noticed the association between pain and mood before I did.
• Level Three: I am conscious of the pain but consider it useful information or feedback that tells me to change my behavior. I need to use ice or heat, rest more, postpone an activity, or change
  position, all in the interest of not having the pain increase.
• Level Four: I am now very conscious of the pain, and at this level, pain is dictating more of what I do that day. I might have to cancel plans, refrain from certain activities or movements, rest, take off my shoes, use ice/heat or a TENS unit. When pain is at this level, I “give in to it” and recognize that my day is now more about pain management than anything I might have had in mind. I might read a book, watch something absorbing on TV, listen to a podcast or music, eat my favorite foods—a bit of pampering that feels like a treat despite the pain.
• Level Five: Pain is now the driver and commands attention as I take steps to ameliorate the pain. More serious medications might be used. The factors here are the effects of pain on my awareness, mood, activities, plans and sociability. For me, levels one and two are manageable (i.e., I can continue my day), level three is tolerable (my day continues but may be curtailed in length), level four is a fight to keep the pain manageable (my day gets rearranged or canceled), and level five is unmanageable (cancel everything that can be canceled).

The person who wrote the questions asks: “Should I try harder so it doesn’t affect those around me?” No. Your pain is a part of the family system, it is not yours alone, and the system will have to find ways to manage the pain. What you can do is clue the family in to your level of pain and your plans to manage it. For example: “Today is a level four, I suggest you all go about your day without me, and I won’t be making dinner, so order in.” You don’t always have to take care of them as well as yourself.

Further reading:
Linton, S.J. & Shaw, W.S. (2011). Impact of psychological factors in the experience of pain. Physical Therapy, 91, 700-711.

Yoshida, T., Modelton, et al. (2012). Cognitions, metacognitions, and chronic pain. Rehabilitation Psychology, 57, 207-213.

Zelman, D. C., Smith, M. Y., et al. (2001). Acceptable, manageable, and tolerable days: Patient daily goals for medication management of persistent pain. Journal of Pain and Symptom Management, 28, 474-487

Post-Polio Health (Vol. 39, No. 1, Winter 2021)