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5 Tough Choices You Face When Chronically Ill or in Pain

  [ 56 votes ]   [ 5 Comments ]
By Toni Bernhard, J.D. • www.ProHealth.com • March 22, 2013

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~Source: Psychology Today, January 28, 2013 

By Toni Bernhard, J.D.

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. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” 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 is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her new book, How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, is available for pre-order and will be released in September. Until forced to retire due to illness, Toni was a law professor at the University of California—Davis, serving six years as the dean of students. Her blog, “Turning Straw Into Gold” is hosted on the website of Psychology Today. She can be found online at www.tonibernhard.com.

Reprinted with the kind permission of Toni Bernhard.

 


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DISCUSS THIS ARTICLE   (5 existing comments) Post a Comment 


You are my new hero!
Posted by: merwinsson
Mar 27, 2013
I couldn't have expressed how I feel about my chronic issues any better than that (and probably a lot worse). You truly know what it's like to have mysterious unsolvable issues with pain and fatigue, no doubt about it.
Reply Reply

Well said
Posted by: lvjesus
Mar 27, 2013
It is frustrating. Another thing I find frustrating is constantly trying to figure it out. If I am more exhausted one day over another I am constantly thinking, what did I do? Often times I will say, I'm tired, and my husband will say, why? Uh, fibro? I have to accept that sometimes there is no why, it is simply a fact of my life.

It works the other way too. I feel better, I start to think, maybe doing _____________ (fill in the blank with going to bed earlier, showering at night, ect) has broken "the curse." NOT!
Reply Reply

Thank you so much
Posted by: 013101
Mar 28, 2013
I'm so glad to hear that my article resonated with you. Thanks for taking the time to give me this feedback. Here's a follow-up I wrote after hearing from so many people about their own tough choices:

http://www.psychologytoday.com/blog/turning-straw-gold/201303/more-tough-choices-you-face-when-chronically-ill-or-in-pain

Warmest wishes,
Toni
Reply Reply

Response to 5 Tough Choices
Posted by: mrussell
Mar 29, 2013
Such a Great Article, and so well said! It IS a 24/7 thing to try to figure all this out daily, and there is just no standard routine to it that I've been able to find. Some days are Great and I can get lots done (for me); others not so good, and I am truly unable sometimes to have a clue as to what I did different to cause it. So love ProHealth and their fantastic people!!! Thank you!!!
Reply Reply

INTERSTITIAL CYSTITIS
Posted by: g44reta
Feb 5, 2014
I've had IC for 24 years and I wish I had this website and your article on "5 Tough Choices..." then. This article should be read by every new chronic illness patient and posted in every doctors office or the waiting room where you will be seeing the doc.
I live in Vermont and all of the great urologists who were familiar with IC left the state, so, I'm trying to deal with that, and once again, tell my pain doctor and primary care physician what my illness is. Your comment about it being a full time job is so right on, and I thank you for putting that out there. Your article gives me great relief, in that we are people too, and even though we can't do everything we used too, we are still the same person. Thank you so much for your incredible insight.
Reply Reply
 
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