While my illness comes with many, many symptoms, the one that seems to affect my daily life the most is my exhaustion. And to me, I consider that exhaustion painful on both a physical and mental level. However, a variety of google searches quickly shows me that pain and exhaustion are constantly talked about separately.
I’m no doctor but this just seems plain wrong. Pain is often defined as physical suffering or discomfort caused by illness or injury. If I look at this definition, to me exhaustion falls smack dab in the middle of it. I physically suffer because I am exhausted. The level of exhaustion that comes with a chronic condition is so deep that simply standing for a short period of time can be too much. Constantly pushing myself to stay alert, keep my eyes open, and stay focused are also ways my exhaustion plays out, each of which causes me physical discomfort.
Then there’s the more direct pain that is caused by exhaustion. For example, I am forced to lay on my couch or bed for over 12 hours a day because of my exhaustion. This causes back pain and has greatly weakened my body to the degree that I can no longer perform daily tasks such as grocery shopping or vacuuming. Because of exhaustion, there are even times that chewing is too much work for me so I go without food.
In short, the definition of pain seems way too narrow to me. On top of what I already described, what about mental suffering and discomfort? While some definitions of pain include mental suffering, many do not. Those that do not disregard the pain associated with how it feels to have brain fog due to exhaustion. And the pain that comes with exhaustion-induced short-term memory loss. This sure feels like suffering and discomfort to me. At the very least, “physical” should be removed from all definitions of pain.
So why is sleep and pain often thought of as two separate concepts? These examples barely touch the surface of what exhaustion is and does to a person. In looking up the definition of exhaustion I found this: A state of extreme physical or mental fatigue. This sure sounds painful to me. Given all this, it simply doesn’t seem right to not consider exhaustion to be painful. In fact, I find it a bit insulting.
I know I’m not the first to have had someone say to them “oh… you’re just tired. I didn’t sleep last night either and I just can’t think straight today.” Grrr… We’re not just talking about being tired here. And that’s the problem. Tired and exhaustion are put together rather than exhaustion and pain. Exhaustion, unlike simply being tired, comes from not sleeping well for extended periods of time, years even. It also comes from living with various types of pain for long periods of time. Exhausted of being exhausted; exhausted from being sick. It's all painful!
So why are pain and exhaustion still talked about as separate and distinct states? I see exhaustion moreso as a subset of pain, a type of pain. By putting them into separate categories I almost feel like it does those of us that primarily fight deep exhaustion on a daily level an injustice. People hear pain and think one thing; people hear you are exhausted and think you must be doing something wrong, that there’s a quick fix available for you, or that it’s really not that big of a deal. They subconsciously align it with simply being tired.
Okay... now that we’ve deep-dived on exhaustion, let’s bring this around a bit. For those of you familiar with my writing, you know I write about finding realistic optimism within life with a chronic illness. So where is the realistic optimism here? Well, I think we clearly have talked about the reality of exhaustion. What about the optimism part though?
First, knowledge and awareness is quite powerful. The more that we can share information like this with people, the easier things get for us. When we talk about exhaustion, people won’t just scoff it off as much anymore if they realize what it really is. We will have less to prove (not that we owe it to anyone to “prove” the validity of our symptoms or conditions but we often find ourselves in that position).
Second, as cliché as it sounds, it is what it is. If you ask me if I have pain, in my mind I include exhaustion as part of that pain. It’s self-validating and provides a more accurate depiction of my life. It’s me authentically sharing what my life is like. In the past I considered exhaustion separate from pain so when people asked me if I was in pain, I would scale back my level of pain. However, that caused me to question myself – why can’t I do this or that if my pain level is that low? What is wrong with me – did I lose my motivation? Have I become lazy? Now that I include my exhaustion level in my pain rating, it all makes more sense. My pain level aligns with my ability level. Basically, I’ve right-sized my illness with my abilities. And honestly, that feels like a huge mental burden has been lifted off of me.
And that’s where my optimism comes from – figuring out that exhaustion is part of pain. By putting exhaustion on the playing field with pain, my symptom and ability level line up. I no longer question myself, I feel more validated, and I have hope that by continuing to share what exhaustion really is that eventually the world will catch on that fatigue is one facet of debilitating pain; it’s not to be minimized.
With knowledge comes power and with that comes change in attitude and perceptions. With changes in these areas, our lives can become easier. We will no longer have to prove what exhaustion does to a person to our employers, disability insurance providers, friends, and loved ones. People will simply know. And that’s a burden lightened… and that’s where I find my hope and optimism.