It’s been a rough few weeks for me. I’ve had a lot of stress happening, and some close friends have had bad things happen to them, and I’ve been left feeling like the best I can do on any given day is make it to work, sit my butt in the chair, and not cry. I have a lot of friends who have been trying to help, giving me advice, telling me what works for them. Unfortunately, these tend to be people who are not suffering from mental illness or who have never suffered from mental illness. And so I’ve spent a lot of this week staring people’s privilege in the face while they tell me I should just “be more social” or “stop watching TV”, and I have to explain how that’s not possible for me right now.
People don’t understand why I can’t make certain changes in my life. That makes sense. I don’t look sick or injured. I am not mentally incapable in any way, and sometimes I can get a great deal done in a short period of time. I sleep enough, I don’t have an excess of things going on. What is it about my life that makes it so impossible for me to adjust my priorities and work on things like socializing or reading more often or cutting TV out of my life or exercising?
The difference between your life and mine is made up of spoons. For you, getting out of bed, eating your breakfast, and going to work might not take much out of you. For me, it’s a difficult process that requires a lot of high level thinking and a lot of emotional regulation skills. The best metaphor that I know of is that my dad once described me as a duck: people watching me on the surface of a lake might think that I’m placidly swimming along without putting much effort in, but if you look just below the surface I’m paddling my little heart out. That’s what having a mental illness is. Now you might ask what am I doing under the surface just to get out of bed and make it to work in the morning. Well, I’m fighting my own brain.
Let’s just take today as an example. Last night I had a meltdown about socializing, which means that today I woke up tired. I spent a good ten minutes convincing myself that yes, I did have to go to work today and face people again (typically it takes me ten minutes between waking up and getting to work, so that’s a lot of time for me). I then spent the next ten minutes trying to decide whether to buy coffee now or later. To you this is no big deal. To me, this is an important choice. Coffee is an appetite suppressant. If I drink my coffee first thing in the morning, I’m more likely to get hungry for lunch. Drinking coffee first thing in the morning rather than later is a conscious choice to try to set myself up to eat. However leaving my office to go get coffee halfway through the day can be an important act of self care. I spend half my morning trying to decide whether I want to prioritize eating or breaking up the boredom and anxiety of my day.
After I get to work, I look at my to-do list. I have about enough actual work to last me an hour, then the rest of my day is spent killing time. Boredom triggers anxiety for me. Huge anxiety. I try to think of as many possible things to distract myself as I can, and then I write them down. Now I have to decide how to start my day. Generally if I go until 10:00 without accomplishing any work, I begin to wallow in self-judgment, however if I usually don’t have much energy first thing in the morning and if I finish all my work first thing I fall back into boredom by the end of the day (see: anxiety). Over and over I renumber the things on my list to try to find the perfect combination of real work and social media work to keep myself engaged and not feeling like a failure.
Currently, my phone has a single message. I know who it’s from. I can see the little red light blinking at me. It’s from someone who doesn’t speak English, who’s called me repeatedly. I tried to send him to intake where they have interpreters, but thus far I haven’t been able to get him the help he needs. I’m afraid to listen to the message and be reminded that I couldn’t help this person, so instead every time I glance over at my phone I have a flashing red reminder of it. This means more mindfulness and emotion regulation work to keep my anxiety and self-hatred in check.
After I finally get my list in order and start doing work, I have a hard time concentrating on one thing because I always think I should be completing everything at once. Periodically my work will devolve into rabid clicking between tabs, typing two words before jumping to something else. When this happens I have to take five minutes to close my eyes and breathe slowly, reminding myself of one-mindfulness. Finally I make it to writing this blog. Some of you might say this is a waste of my time or that I could be spending the time saving my energy for something more beneficial later today. The reason I’m choosing to do this is because it’s a distraction, and when I don’t distract at work I start to get extremely anxious (see again, boredom). Anxiety takes more energy, and leaves me potentially incapable of staying at work for the rest of the day. In the back of my mind there’s the ever present knowledge that my to-do list is not long enough for eight hours. I am always playing out little arguments with that fear, trying to keep myself in the here and now.
It’s now about 1 PM and I haven’t eaten lunch yet. I’ve been thinking about lunch since I got to work though. I’ve imagined what I could eat, how long it would take. I know that eating is a nice break from staring at the computer for me, and that it leaves me feeling a little bit refreshed. However it also leaves me with a lot of judgments and depression about myself that distract me and require a good deal of work to leave behind. Thinking about food is stressful, so the past five hours have been rough, thinking of how good it would taste before immediately jumping to the fat on my stomach or my thighs and the jeans that I didn’t fit into this morning. Back and forth, back and forth I go, my brain constantly ping-ponging between the arguments for and against food. By the time I actually get around to eating I’m almost out of the ability to manage stress, and so eating leaves me very vulnerable. Simply making it to the end of my work day might take all the rest of my energy.
But I also have therapy today, and as anyone who’s been to therapy knows that’s emotionally draining. So by the time I get to the end of the day I will be fairly worn out. I’m planning to cook dinner, because one of my goals is to be able to cook instead of eating out so that I can afford to feed myself in the future. This has also been a balancing act of anxiety about money and anxiety about food. I have to go to the grocery store, which at times has left me bawling in the fetal position, so I’m already steeling myself against that experience. This all will take a great deal of my emotional energy because food makes me worried and afraid, and I will need to use a lot of calming strategies to deal with it. Every one of these stressors not only takes up some of my attention and my energy, but then asks me to engage a complementary skill or coping strategy so that I can make it through the day, keep my job, and not have a melt down.
Add in to all of this that if I don’t eat, I’ll be dizzy and tired by the time I leave work, and the fact that I spend all day at my office freezing cold and trying to warm myself up, and it leaves me fairly exhausted by the end of my day. If I were to go out and try to socialize, it would be all I could do to smile and nod. I have no energy left to read instead of watching TV because my eyes would fall out of focus and I’d read the same paragraph over and over and over. I have spent all day reviewing the DBT skills options and trying desperately to engage skills that I’m still learning and which are incredibly difficult for me. This is a light day for me. Every day of my life I spend constantly calculating how much I can handle and how to manage my emotions.
Some people might say that we always get to choose how we act or what our attitude is, however the fact that I have to deal with all this anxiety is not a choice of mine. I can make choices about how to react to it, and about how to use the small amounts of energy I have. I can make choices about where to spend my time and focus when I have the energy to calm myself. And yes, I do get some choice about what to do with my spare time. However I don’t get to make a choice about the fact that my brain is nearly always screaming at me with something it wants to take up my full attention. I’m left with a very limited number of choices: listen and freak out. Engage skills. Or stuff it all down and pretend it’s not there. I don’t really get to prioritize other things over these because these are always immediate, strong emotions that demand attention. Survival is always my priority.
With all this going on just below the surface simply to keep myself a functioning member of society, is it any surprise that it sounds ridiculous to me to suggest that I should just change my lifestyle up, or face my social fears? Is it any surprise that I simply CAN’T strike up more conversations or spend a lot of time emotionally prepping myself for social encounters? Is it any surprise that I’m hurt and upset when people suggest these things because they invalidate all of the work that I’m doing and then tell me that I should take responsibility for being lonely and frustrated with my life?
I realize that for the most part all of this work is invisible, and so no one means ill when they suggest things to me. But from the perspective of anyone with an invisible illness, you all need to know that it hurts when you say that.
It’s hard enough to validate myself and the work that I’m doing as it is. Society is hardly patting me on the back for giving myself permission to take a nap last night instead of calling my loan company. I already feel useless and incompetent at many things because I don’t have the energy to figure them out right now and because the work that I am doing hardly looks like work (right now my to do list includes things like “cook”, “Hot bath”, “make it to the end of the work day”, and “eat lunch”. I feel like I should probably just add “breathe” on there with how basic most of this stuff is). Being reminded that I have so much more I could be doing, or that I supposedly have the ability to change my situation if I just tried hard enough feels horrible. It makes me feel like everything is my fault, and it tells me that if I want to have a better life I should just change.
Remember that having extra energy or the choice of how to prioritize things in your life is a privilege. Survival is my priority and it has to be right now. Whenever it looks like someone isn’t doing very much but is worn down and complaining, contemplate how much they might be doing under the surface.
We Got So Far To Go 