What I Wish You Understood About Chronic Fatigue

I don't write about it often, but I've battled chronic fatigue syndrome since the time I was 11 years old. I got Epstein Barre virus, and basically it never went away. It simply morphed into CFS, which is one of those odd things that illnesses can do. Morphed probably isn't the technical term, but I don't think they really know what caused it, so it's as technical as I can get.

CFS, also referred to as Myalgic Encephalomyelitis (ME), is an often misunderstood illness. We often hear statements like, "Well everyone gets tired" or "You just need to get more sleep". Sometimes it's "Tell me about it, I've been so busy" or my "favorite" (i.e. the one that makes me want to smack you/vomit) "Welcome to my life," followed by a litany of how they're so busy with work and PTA meetings and little league baseball and their side business selling jewelry or leggings or whatever.  Decidedly NOT listed in that list is chronic illness.  I want to make some super snarky comment about how PTA meetings must really feel like hell (in fairness, they probably would to me), but I keep it to myself, on the off chance they're not telling me about a chronic illness they do in fact have. But still, there are clearly a lot of misconceptions about ME/CFS, and I'd like to explain what it actually feels like, at least to me.

• I'm not just tired or sleepy. I'm not even just physically exhausted. There are times when I feel like someone has drained the blood from my body, making it impossible to function. I'm physically, mentally, emotionally exhausted to the point that just doing something, but thinking about doing something, is too much to bear. 

• There are physical symptoms (in addition to the exhaustion). I get mysterious numbness in my hands and fingers, I get swollen lymph nodes under my arms, and at times it can hurt to put my arms down by my sides.

• My limbs feel weak and unimaginably heavy. 

• Sleep often doesn't help. Sure, it helps compared to not getting sleep, but that would be the same for anyone - all humans need some sleep. But it seems at times like I can never get enough sleep. And yet I'm not sleepy - not as in yawning, maybe I'll take a quick nap sleepy. I'm completely drained. There weeks I nap every day after work and go to bed by 9PM and still, it seems like it's not enough. 

• There are headaches and joint pain that almost become "just part of how you feel". I honestly, and I'm being 100 percent serious here, cannot remember the last time I didn't have a headache, or that my body didn't hurt.  

• It's not always when I'm busy or running around. I can be relaxing at home and feel barely able to move. 

To be clear, I'm not saying that those with hectic schedules and three kids and two jobs aren't legitimately tired - or even exhausted. I'm sure they are, in fact. I'm asking them simply not to dismiss the way I feel because "they know what it's like" or "everyone gets tired."  They do not know what it's like, unless they battle illness exhaustion, because it it's a different type of exhaustion all together. And perhaps everyone gets tired (in fact I'm sure they do) - but that minimizes an illness that can at times be debilitating.  I wouldn't minimize your asthma because I'm winded after I go for a run. You're lack of breath is an illness. Mine is being out of shape, at least when it comes to running. This is the same thing, and I'm asking people to be a bit more aware and understanding.

Why am I writing about this now? Because May 12th is International Awareness Day for Chronic Immunological and Neurological Diseases, including Me/CFS, Fibromyalgia, Golf War Syndrome, and Multiple Chemical Sensitivity (I don't know about the other illnesses to write on them, so will let others do so). It's incredibly important that we bring awareness to these illnesses, which are so frequently brushed off when "we don't look sick".

What Does Mental Health Acceptance Look Like?

Today is World Mental Health Day. It's one of the few days each year where even those who are not specifically mental health or chronic illness advocates seem to be interested in the subject. My guess is mostly because the hashtag is trending on twitter, and people who may not normally see posts about mental health do. I'm kidding, but only partly (it really was trending). Whatever the reason, it makes me happy and proud to see such a large group of people speaking out, or at least following along with the discussion, liking posts and retreating tweets, and what have you.

Needless to say, every day is mental health day for me, and for everyone else who makes up the twenty five percent of the US population that battles a mental heath condition. That's right, approximately one quarter of people in the US. One third when including addictive disorders. Which may seem startling in itself. What's even more incredible is that despite this glaring number, society at large likes to pretend it isn't an actual illness, scraping the subject under the carpet, only to pull it out when they need an easy scapegoat for some sort of tragedy. As those of us who advocate increase in number, refusing to be pushed down and quieted, we are making headway. Still, we have a long way to go before mental health is truly accepted.

So, what does that mean, mental health acceptance? To me, acceptance is:

• When you understand that it is a medical condition, in an organ, that just happens to be the brain. Just like any other chronic, physical condition, that affects a particular organ or system.

• When we no longer have to explain why it is not "all in our heads", no longer told to just be more positive, look on the bright side, adjust our attitude, be more grateful, and we'd be better. 

• When we can take a sick day for our condition just as someone with asthma or diabetes or heart disease would, without any overt or subtle backlash. 

• When our conditions are covered by insurance companies and other healthcare providers just as physical conditions are. 

• When our veterans suffering from PTSD get the care they deserve. 

• When we can openly tell people about our illness without sideways glances, backing away, awkward pauses. 

• When you see us as a person, an individual, and not our condition. 

• When you realize that not everything we do or say is because of our condition. We are entitled to emotions just like everyone else.  

• When you stop thinking that we'd be better if we were "normal". 

• When people understand that we are 10 times more likely to be VICTIMS of violent crime, not perpetrators.

• When you understand that (hypo)mania, panic attacks and anxiety are serious, and not us  being "dramatic". 

• When you realize we didn't choose our conditions, just you did not choose asthma or diabetes or cancer. 

• When you understand that it is a depressive episode, and not us being lazy.

• When we don't have to explain that we aren't being rude or boring, we have social anxiety. 

• When you stop trying to shame us for taking medications that save our lives. 

• When you are as willing to help someone in a mental health crisis as you are in a physical health crisis. 

• When you realize that depression can be a fatal illness. 

• When people are no longer afraid to speak out about a loved ones suicide, or seek help for their own suicidal feelings. 

• When we stop having to pretend we aren't sick because it makes you uncomfortable. 

• When you call us strong for living every day of our lives with this illness, instead of crazy. 

That is mental health acceptance. 

What Does Mental Health Acceptance Look Like?

Today is World Mental Health Day. It's one of the few days each year where even those who are not specifically mental health or chronic illness advocates seem to be interested in the subject. My guess is mostly because the hashtag is trending on twitter, and people who may not normally see posts about mental health do. I'm kidding, but only partly (it really was trending). Whatever the reason, it makes me happy and proud to see such a large group of people speaking out, or at least following along with the discussion, liking posts and retreating tweets, and what have you.

Needless to say, every day is mental health day for me, and for everyone else who makes up the twenty five percent of the US population that battles a mental heath condition. That's right, approximately one quarter of people in the US. One third when including addictive disorders. Which may seem startling in itself. What's even more incredible is that despite this glaring number, society at large likes to pretend it is an actual illness, scraping the subject under the carpet, only to pull it out when they need an easy scapegoat for some sort of tragedy. As those of us who advocate increase in number, refusing to be pushed down and quieted, we are making headway. Still, we have a long way to go before mental health is truly accepted.

So, what does that mean, mental health acceptance? To me, acceptance is:

• When you understand that it is a medical condition, in an organ, that just happens to be the brain. Just like any other chronic, physical condition, that affects a particular organ or system.

• When we no longer have to explain why it is not "all in our heads", no longer told to just be more positive, look on the bright side, adjust our attitude, be more grateful, and we'd be better. 

• When we can take a sick day for our condition just as someone with asthma or diabetes or heart disease would, without any overt or subtle backlash. 

• When our conditions are covered by insurance companies and other healthcare providers just as physical conditions are. 

• When our veterans suffering from PTSD get the care they deserve. 

• When we can openly tell people about our illness without sideways glances, backing away, awkward pauses. 

• When you see us as a person, an individual, and not our condition. 

• When you realize that not everything we do or say is because of our condition. We are entitled to emotions just like everyone else.  

• When you stop thinking that we'd be better if we were "normal". 

• When people understand that we are 10 times more likely to be VICTIMS of violent crime, not perpetrators.

• When you understand that (hypo)mania, panic attacks and anxiety are serious, and not us  being "dramatic". 

• When you realize we didn't choose our conditions, just you did not choose asthma or diabetes or cancer. 

• When you understand that it is a depressive episode, and not us being lazy.

• When we don't have to explain that we aren't being rude or boring, we have social anxiety. 

• When you stop trying to shame us for taking medications that save our lives. 

• When you are as willing to help someone in a mental health crisis as you are in a physical health crisis. 

• When you realize that depression can be a fatal illness. 

• When people are no longer afraid to speak out about a loved ones suicide, or seek help for their own suicidal feelings. 

• When we stop having to pretend we aren't sick because it makes you uncomfortable. 

• When you call us strong for living every day of our lives with this illness, instead of crazy. 

That is mental health acceptance.