When someone asks how I am these days, I have two answers: “I’m fine” and “I’m tired”. They both mean pretty much the same thing, but it depends on who I’m talking to which one I choose to use.
When most people say they’re tired, they mean just that. Maybe they didn’t sleep well, had a busy day, or any other number of things.
When someone with Chronic Fatigue Syndrome says they’re tired, what they mean is quite different. Being tired with this illness can mean:
- Being so exhausted that you can barely move, if you can move at all.
- Your body feeling so weak and run down that simple tasks like brushing your teeth or hair are insurmountable.
- Feeling hopeless and just sick and tired of being sick and tired with no signs of relief on the horizon.
- Feeling the exhaustion deep in your bones, and having even the smallest movements make it worse, or worse still, cause pain.
- and many other things.
Of course, these aren’t things that we say when someone asks how we are. For the most part, it’s just easier to keep conversations like this general and short…the feeling that the person you’re talking to doesn’t really want or need to hear all the details is one that happens often, and even those closest to us may be unaware of just how awful we feel.
The next time you ask someone with a chronic illness how they are, and they respond with “I’m fine” or “I’m tired”, take a moment and think – there is probably a lot more going on below the surface than you realize.
For the first two years my psychiatrist was treating me, she was treating primarily for depression, with anxiety as the secondary thing that she was trying to treat. I kept telling her that I was depressed because I was feeling anxious (and physically terrible) and she kept insisting that I was really depressed and that the depression was causing the anxiety. This was before my Chronic Fatigue Syndrome was diagnosed, and desperate for some relief, I went along with her treatment recommendations.
In retrospect, now that I know about the CFS, I believe that my treatment-resistant depression can be largely attributed to that. I mean…if you were so exhausted that you could barely move most of the time, wouldn’t you be depressed too? Wouldn’t you feel anxious about life? I know I have an anxiety disorder, and I know I have depression, but my CFS diagnosis has completely changed how I look at and approach everything.
Having a chronic illness changes your entire life. It can make doing even the simplest of things, things that you took for granted “before”, impossible. Something as simple as brushing your teeth can suddenly seem insurmountable. Putting food in the microwave to heat it up seems like too much effort, even though your brain tells you it’s not that bad. Everything seems like a challenge, and the entire time, your brain tells you that you need to just push through and do it. For some, pushing through works…unfortunately, for a lot of people with CFS and similar conditions, pushing through is not an option and can result in an exacerbation of symptoms.
If you have been diagnosed with mental health issues and chronic illness(es), stop for a moment and think about this. Is it the same for you? Based on my experience, this seems like something that is probably more prevalent than people think it is. It took the CFS diagnosis for my psychiatrist to change her view on my treatment, and things are starting to look up in terms of my mood. Now, if I just had the energy to do the things I want to do, I’d be good to go!
Dear Chronic Fatigue Syndrome,
You and I have been friends a good long while, although my doctor only recently figured that out. I knew there was something wrong, but everyone I was sent to was unsure of what to diagnose. You sure are a tricky one, hiding in plain sight like that. You’re so good at disguising yourself as so many things, and that makes it hard for doctors to see you. You are the ultimate player of hide and seek.
I wanted to talk to you about a few things today, since I have some things to say to you.
I am tired. My body hurts. My brain feels like it’s been replaced by cotton balls.
But mostly…I’m just tired.
You make it so hard to do things most people take for granted. Simple things, like brushing my teeth, cooking food, and vacuuming. I miss being active. I miss my job, my friends and my hobbies.
I miss my life.
I miss being able to do what I want, when I want to do it. I miss not having to plan out every detail of every expenditure of energy, to see if something can be done more efficiently. I miss just existing without having to plan for it and know I won’t be able to do what I want to.
It’s frustrating, being like this. It makes me want to scream at you, some days, Chronic Fatigue Syndrome. Why can’t you just let me be how I want to be for a day? No, I don’t even need a day. An hour. Please…I’ll do anything.
For many, that relief never comes.
You know, it’s a good thing we are resilient, and can keep it together most of the time when you drag us through hell and back, trying to make us give is.
We won’t give in, though. We are strong.
A CFS Patient
The Merriam-Webster Dictionary defines “recovery” as “the process of becoming healthy again”. For those of us with mental and/or chronic illness, it can often seem as though becoming healthy again is something that is either completely out of reach, or so far away that we can’t imagine what it must be like.
I hate the word “recovery”. It gives a false sense of hope. It makes people who don’t know all the details think we’re going to recover completely from whatever we are fighting with, in our minds and in our bodies.
For many, “recovery” is unattainable. We are never going to become healthy again. Of course, not everyone wants to hear this, but at some point we have to face the facts…chronic illness sucks. Mental illness sucks. Sometimes it feels like EVERYTHING sucks, but we know that’s not true, even though it may feel like it is.
I am writing this post knowing that it may offend people. For a lot of people, the concept of “recovery” is something they cling to when they have nothing else, and this is something I admire greatly.
But I can’t do it. I can’t lie to myself and think that I am going to recover.
And if it’s a “partial recovery”?
Well, then let’s come up with a new word. What do you think?
You’ve been going to the doctor for months. No, wait…years. You’ve been going to the doctor for years. They’ve sent you to all types of specialists and tested for all sorts of things, and it’s all come back a bit odd, but mostly within a normal range. You start to feel like your doctors have stopped taking you seriously…have written you off as a hypochondriac.
You know something’s not quite right, even though everyone keeps telling you you’re fine. Your endurance and stamina are slowly sapped from your being…you can’t focus, can’t concentrate…can barely walk around your apartment sometimes.
After another year or so of complaints, your doctor sends you to one more specialist. It feels like it’s just to shut you up, but you know she means well. The specialist runs a few tests and gives you iron infusions, which do nothing except make you feel awful and raise your iron levels very slightly.
You wait another couple of months, and then you go back to your specialist. You practically beg him…”Please, you have to help me. I can barely function to take care of myself most days.”
He says he knows you have depression and anxiety – could it be from that? You say no…you know what depression fatigue feels like, and this is different.
He goes back and forth and asks a few more questions, and then, after a little while…
“You have Chronic Fatigue Syndrome. There’s not much we can do. It may or may not go away over the course of the rest of your life. The best thing you can do is to try and stop yourself from getting frustrated. We’ll follow up in a couple of months. Thank you for coming in.”
You thank him quietly and leave his office, walking slowly to your car. You get into the car and sit there. You KNEW there was something wrong. You hoped, begged for answers…and now you have them. You entered his office hoping for relief, and you have left with something for which relief is limited. It feels hopeless, and you feel helpless.