How to Explain Your RA Fatigue
Fatigue. It seems like we talk about fatigue all the time. Every month is a new article or post about fatigue. We’ve had it up to here with fatigue. We have exhausted our reserve for talking about fatigue. Heck, we are fatigued about fatigue. Fatigue. FATIGUE!
Did you ever have that weird experience where you say a word so many times in a short period that it starts to lose all meaning and sounds bizarre? Well, that’s where we are with fatigue right now. This is a perfect metaphor (well, technically, it’s a simile, but who’s counting?) for how much fatigue can impact the lives of those of us living with rheumatoid arthritis (RA) and other chronic autoimmune conditions. We deal with fatigue so much that it seems like it can take over our entire lives and cause us to lose focus on anything else.
Fatigue can't easily be put into words
We all know that fatigue isn’t just plain exhaustion or lack of sleep. We have been over it so many times that I don’t think I need to rehash the triple-decker sandwich nature of fatigue and how it actually works with physical exhaustion, lack of motivation, and increased energy drain served with a side of lack of mental acuity. It’s all those things and probably more — things that can’t easily be put into words.
Conveying the full scale of RA fatigue
It’s hard to explain to someone who doesn’t deal with fatigue just how big of a role it plays in our lives because, hopefully, they have never had to experience something like it in their own lives.
As humans, we have a tremendous capacity for empathy, but it comes with a huge caveat — it is much more difficult and much less likely for someone to really understand something unless they have experienced it themselves. You can talk until you are as blue as a Smurf, and still you won’t be able to convey the full scale of fatigue to someone who hasn't experienced it. It’s just the way it is, and that’s something you are going to have to accept and get past so that we can move on to the next part, which is: How do we explain fatigue, then?
Fatigue isn't what some people think it is
Well, I think the first and most important thing for explaining fatigue to someone is more about what it isn’t than what it is.
In my experience, most humans have built-in preconceptions based on years of consuming media and, most recently, years of consuming absurd and obviously-fake-but-not-to-everyone images, posts, and videos on social media. The amount of "cure-all" and "easy remedies" that social media has birthed rivals the old "traveling snake oil salesman" days.
In my experience, it helps to start off by telling the person that fatigue isn’t what they think it is and there is no easy cure. It is going to be difficult — don’t underestimate a person’s power to cling to the tons of misinformation out there about chronic illnesses like rheumatoid arthritis.
The mental and physical burden of autoimmune fatigue
Once you have broken through the baloney, the real work begins. It’s hard to put into words a thing that is, well, hard to put into words, but you have to try. You can tell them it’s as if someone made you pull an all-nighter, told you you were getting a divorce, and forced you to wear a 50-pound special ops backpack around all day, all within the same 24 hours. That should start to give them a picture of the mental and physical burden that is autoimmune fatigue. I find people do much better with real-world examples rather than just flat-out explaining what’s happening. It’s a human thing.
Will they understand eventually?
Finally, once you reach a point where you think they understand and they are pretty much on your side and they are sympathizing with you, you kind of have to trick people into understanding your fatigue without them fully knowing you are doing it... or else, and this is wild but true, some people will tell you how your RA is. The RA you have and they don’t. The RA you have lived with for years. Yeah, like I said — it’s wild.
Still, though, once you get to this part, you can explain why you have to cancel and reschedule so much or miss important events and it will land on much more understanding ears — I promise.
Passing on the understanding
Fatigue. Like AI, it’s hard to understand, we still don’t fully know where it comes from, and it has the potential to destroy life as you know it.
If you can pass on just a little bit of that understanding, though, it will help everyone around to be a bit more sympathetic when it comes to your RA. Talk soon.
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