Being chronically ill or in pain can feel like a full-time job

Being chronically ill or in pain can feel like a full time job

Suffering from chronic pain or illness—or, as is often the case, both—can feel like a full-time job. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships as skillfully as possible. This ongoing decision making makes up a major part of the workload in this full-time job—a position we certainly never applied for!

Here are five tough choices we continually face. There aren’t easy answers to the issues they raise: that’s why they’re tough choices.

1. Do we talk openly about our health problems or do we keep them private?

This is an ongoing tough choice we face whenever we communicate with friends and family, whether it be in person, by phone, by email or even text. If we talk about our health problems, some of them may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former self or, even worse, as dependent children.

On the other hand, if we keep quiet about our health issues—perhaps even acting “fake healthy” as I’ve been known to do— we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support—both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

2. Do we ignore a new symptom or have it checked out by a doctor?

On the one hand, it’s not good for us emotionally to be overly focused on every little ache and pain in our body. In addition, we may be concerned that if we raise a new symptom, our doctor will think we’re being oversensitive or even a hypochondriac—either of which could affect the quality of care we receive.

But consider this. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves. It isn’t easy, that’s for sure.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?

There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, utterly exhausting myself, combing the Internet for cures. Anyone can create a website, set up a payment plan, and ask for your credit card number. Anyone. Treatments-for-sale can be packaged to sound very seductive. People spend thousands of dollars on false cures. I know because I’ve done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These tough choices—what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking—also make up a major part of the workload for those of us with chronic health problems.

4. Do we push our body to the limit or do we always play it safe?

Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so that you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

5. Should we aggressively fight to regain our health or should we accept our fate?

Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.

It wasn’t until I began to accept—without aversion—however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. And, working to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health is…you guessed it—exhausting.

I see that I’ve used the word “exhausting” five times in this piece (not counting its presence in this very sentence!). It’s no surprise that mental and physical exhaustion are the consequences of having to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • Andrea Marie

    Carrying around pain and trying to conceal at the same time can be quite difficult and often challenging. A wince can be misconstrued as personal when it is really an absorption of pain. Many people suffer in silence as to not burden others and to avoid revealing personal and possibly embarrassing health issues.

  • Kay Dee

    The “job” aspect becomes even more apparent when you realize that your specialists and your primary aren’t doing a good job of communicating with each other. One specialist tells the patient to see their primary at ANY sign of infection, and the primary treats them like a hypochondriac when they do so. Patients are frequently treated as though they are not a reliable source of information, so that when they try to share information received from one physician with another, they are often dismissed. God help you if you have to go to urgent care, the ER, or even a new doctor.

  • Varun Kejriwal

    Toni and others,

    I find these 5 questions some of the most significant questions a patient can ask themselves. Balance plays an important role in determining the answers, and that balance varies from person to person. In a greater context, where that balance lies for each person should also influence the way that healthcare of any kind is chosen by the patient and delivered by the provider.

    It would be nice to have some transparency revolving how each of us considers these questions, since I think that would help us determine how we should influence our overarching healthcare system. If policymakers, administrators, providers, and patients were able to see these statistics, maybe we could come closer to holistically personalized medicine. Andrea and Kay bring up important points about the contrast between the patient’s and caregiver’s perspectives.

    As a patient, what would anyone like their caregiver/network to know about the way they answer these questions?

    As for caregivers, what do you find important to know about the way your patients answer these questions?

    Moxe Health

  • Maarten K.

    Love your blog. I have a blog where i share a document I made for people to evaluate their chronic illness. Do you want to take a look at it? May be you can use it or share with others. Thanks. Maarten

  • Maarten K.
  • C. Eleri Hamilton

    If you want to get *really* messed up, be a person with chronic pain/illness parenting two kids with disabilities/chronic health issues. I think it is the health equivilent of working two jobs while attending college full time. Only without the diploma in 4 years :)

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