How do you cope with the fatigue of a chronic illness without alienating your supporters?

I have addressed the topic of fatigue directly and indirectly in my blog posts before.  But because fatigue is such an integral part of the life of a person with a chronic illness, I feel it deserves a post all its own.  Especially because you need to learn how to manage that fatigue and still keep as active a life as possible with your friends and love ones.  It can be a balancing act, but the most important asset you can bring to the table is an objective perspective.

Fatigue is one of the symptoms that people (maybe even the heart failure patient) treat lightly.  How often have I heard light-hearted, good-humored remarks when I talk about being so tired like:  “everyone gets tired”.  There is nothing wrong per se with that remark.  But once you have a chronic illness, your tired takes on a different intensity.  You no longer have the “I just need a nap or a good night’s sleep” type of tired.  
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When I experience this fatigue, it is the type that cannot even be described by the term “bone tired”.  No, I left “bone tired” behind about 3 years ago.  This is “I feel like every bit of energy I have is used up in just performing the basic activities of life” type of tired.  I have looked at the websites of people who have chronic conditions, as well as medical websites describing the fatigue of a chronic condition.  I believe their descriptions are consistent with my observation about my fatigue.

Fatigue is often commented on when discussing heart failure.  The following is from a study that addressed fatigue and heart failure on the NIH website:

• “Fatigue is one of the 2 most common symptoms (along with dyspnea) reported by patients with heart failure (HF).  Also commonly referred to as activity intolerance, fatigue in patients with HF is defined as persistent tiredness and the perception of difficulty performing daily activities because of this persistent tiredness. Fatigue is often one of the first symptoms of HF and is commonly overlooked because it is viewed by both lay people and health care providers as a vague complaint. Indeed, as many as one-third of patients with HF view fatigue as an unimportant symptom and up to 50% report having difficulty recognizing it as a symptom of worsening HF.”

I am sure there is much more to the study, and frankly, as I began to read the abstract it was a little much for me to absorb.  But I liked the quote because it does describe the persistent and consistent nature of the fatigue experienced by the heart failure patient.  I think it also validates that our fatigue is real.  It’s not just something transient that will go away like being tired or drowsy.  It is a bit troubling that so many patients have difficulty giving this symptom the weight and attention it deserves. 

​So I think the first thing that heart failure patients need to do is recognize the significance of fatigue.  It is a real, honest to God symptom that needs to be treated with respect and not minimized. 

What do you do now that you know that your fatigue is real?  Well, you start by understanding that you have to pace yourself.  If you overwhelm yourself with activity in one given day, then you  may pay for it by being too tired to handle other activities a day or two down the road.  This is a bummer, and not just because like me, you want to do as much as your heart allows.  It is because you might have to cancel a plan that involves not just you but your friends or your family. 

You fear that perhaps your friends and family will not understand.  Then you get all defensive and either want to provide too much detail about why you can’t do “X” activity.  Or worse, you get so defensive that you’re ready to provide a lecture on heart failure and fatigue just in case the friends or family members do not get the gravity of your fatigue. 

Please believe me when I tell you that this is not a good idea.  Your friends and family care about you or they wouldn’t fall into these categories.  They want to be supportive.  So they do not deserve to be treated like they are oblivious to your condition, or worse, like they are the enemy.

Still, while supportive it is possible that if it is just a simple activity, it may take a while for your friends and family to process that you really need to stay home and rest.  It may even take a while for you, who feels the debilitating fatigue, to process that you need to stay  home.  Sometimes it is tempting and simpler to just go along with the thought “Go ahead go to the movie.  You can sleep when you’re dead.”  Oh please – like the heart failure patient needs to invite death into the equation any sooner.  Why don’t you just invite the Grim Reaper along to the movie theater with you? Okay so I know the last part is an exaggeration, but so is your head telling your body to do something when your heart is telling you no.  In other words, this is a recipe for disaster. 

Why?  The problem is that every time you overload with activity when your body is saying you need to rest, well you’re not doing your heart any favors.  Do you really want to wear it out any sooner than is necessary?  As for what others think, you also need to understand that many, if not all of the people who you are interacting with do care about you and they want to enjoy spending time with you.  They just cannot fathom how fatigued you feel.  And let’s be honest.  When you were in the flush of health, could you relate to someone who was suffering the devastating weariness of a chronic illness?  No, you were probably oblivious to the feelings of the person.

So here is what you do when your heart tells you that you need to chill in the face of good-natured pleas to join the gang.  You listen patiently to other people, even those who either have advice about what they would do in your shoes, or who just don’t get it.  You flash a disarming smile and then you move on to another topic.  Then you either discreetly disregard their advice or you customize it according to what you feel like you can really, really do.

I do this proudly and without shame.  I do this because my Mom taught me an important lesson about the need to be true to myself and my needs.  I remember all those times I ran into the house wanting to do what my friends were doing – even if I was not sure that it was a good idea.  Mom would say something really irritating at the time like -  “If Mary Smith wanted to jump off the bridge would you want to do it too?”  My first thought was “Yikes, Jump off a bridge?  I can’t even swim!”  But I also wanted to be part of the crowd.  So I rolled your eyes and said something like:  “Well yes, of course I need to jump off a bridge.  What a dumb question.“   And then Mom would look at me, suppressing an eye roll, and would say "No".

Looking back with the benefit of hindsight, I need to say thank you to my Mom.  Because what my Mom was telling me was that I needed to be my own person.  It was okay, in fact perfectly fine for me to decide what I wanted to do and not just follow others.

Once again, perspective is the key.   Occasionally you will have meltdowns because the symptoms you are dealing with are overwhelming.  When this happens, just chill.  You don’t have to necessarily apologize for the meltdown.  I think that everyone you interact with, if they were honest with themselves, would understand that you have a right to be emotional when you are stricken with a chronic illness.  But what you definitely do need to do is thank them for their support.   

I don’t know about you, but negative energy can make me really tired really fast.  So imagine what it does to the fatigue of a chronic illness?  It is a force multiplier resulting in not just chronic fatigue, but massive fatigue.  (Okay, I worked in an agency where one of the buzzwords was “force multiplier” and I have always been dying to use it)  You must try whenever possible to surround yourself with people who see every cup as half full.  And this is really important.  If you find news stories and wall to wall media coverage to be depressing or frustrating, and you can’t just focus on the facts and edit out the commentary that is just pure speculation or downbeat well then you may want to limit your news intake.  

Here are some remarks I found insightful from something called the Canoe.com website:

• Chronic fatigue syndrome (CFS) is one of these "invisible" conditions that can't be seen on the outside. There are no external signs to announce to the world that you feel ill or in pain; no drops of blood, no casts on your arm, and no neon signs around your neck. This can offer solace in many ways. It provides for privacy and the ability to hide your illness if you so wish (to the extent possible).
• At the same time, however, it means that the world may be oblivious to, and at times even skeptical of, the difficulties you face. How can they appreciate what is wrong when outwardly you look just fine? Why would someone give up their seat for you on the bus when you appear healthy and fit, perhaps even young? How can family and friends easily "get" the problem when you look the same as you always have?

While I don’t have chronic fatigue syndrome, this observation reminded me of what used to be one of the most frustrating things about my heart failure.  I still look good and healthy.  But then I realized instead of being frustrated, I feel relieved.  Who wants to look exhausted, or even scarier, like death warmed over? 
​So when someone learns that I have heart failure and says that I look good, I take it as the compliment it was meant to be.  I dismiss from my mind that perhaps that person does not understand the gravity of my condition.  The person who controls my life and who needs to understand the gravity of my condition is me. 

So I smile and thank them, and then maybe I go home and take a nap.  Because it has dawned on me that managing heart failure is a marathon and not a sprint.  I’m going to need all the energy I can muster!