Bipolar disorder is a chronic illness, a severe one for me, and I’ve found it requires chronic (read: Herculean and constant) effort. And no, I don’t just mean the effort needed to take medications or go to therapy and psychiatry appointments, I mean the effort required to do all the little things in life. I mean the fact that I need to somehow locate a massive amount of effort to get through the day — every day. Chronic illness requires effort that just doesn’t stop.
What Is Effort in Chronic Illness?
Effort, of course, is what we all exert to get something — anything — done. The issue is not that. The issue is the sheer amount of effort that life takes.
For example, do you find making coffee in the morning takes effort? What’s the effort it takes you on a scale of one to 10? Maybe it’s a two. It takes more effort than, say, getting a glass of water, but less effort than trying to stay awake without it.
The thing is, on my scale, it’s probably a three.
And that’s not because I find coffee especially challenging to make (although the choice of beans is critical), it’s because everything requires more effort for me than it does for someone without a chronic illness.
Take making breakfast, as another example. I don’t make breakfast pretty much ever. That’s because on my effort-o-meter it’s somewhere around an eight and I just don’t have that in me first thing in the morning. What I do is eat peanut butter on crackers. And truthfully, I don’t even eat my peanut butter and crackers and make my coffee at the same time anymore because I find I have to spread out the effort of those two things, even though each one requires such minimal effort.
So while every person needs effort for everything they do, the effort required for a person with chronic illness is just so much greater and their reserves of effort are just so much smaller.
The Chronic Effort Required in Chronic Illness
And what gets me is the insistent, unending, every-moment-of-the-day effort required just to survive. Standing up from a seated position takes no effort, right? Sure, unless you get dizzy every time you stand up and then it does take effort. Doing your job takes effort but you can do it, right? Sure, unless you are too sick to perform basic functions and then the effort required might be impossible to find.
And what I find is that every minute of the day I have to find the massive effort to do the seemingly-impossible things required just to have anything close to a productive existence. The effort required to work is ridiculous. The effort required just not to sleep all day can feel overwhelming. The effort needed to go out and get groceries just can’t be found. Sometimes it feels like just breathing takes effort.
Effort, effort, effort, effort.
Now I know all this is the price of admission with a chronic illness and that, quite frankly, this is the price of admission of being alive. I get that. But that doesn’t mean it doesn’t suck. That doesn’t mean that the demands placed on a person with a chronic illness aren’t ridiculous. And it doesn’t mean that such unending, insistent demands aren’t overwhelming. And it doesn’t mean that overwhelmedness itself isn’t a problem.
Chronic Illness and Reducing Chronic Effort
And I know what I have to do in a day. I have to do the things that minimize the amount of effort it takes to get me through a day. I have to get groceries delivered. I have to online shop instead of go out. I have to not worry about how I look instead of wasting effort on my appearance.
Sure. Fine.
But all this reduction in effort reduces life itself too. I want to be able to do more things. I want to be able to do things without thinking effort equations in my head. “Well if I do X then I can’t do Y because I won’t have the effort left.”
It’s frustrating to me that I’m working with so few spoons (if you haven’t read it, think spoons=units of effort) and that the spoons I do have require so much effort on my part. Basically, everything. just. feels. so. damn. hard. And when I look back over a day the accomplishments look so damn small. And I want something more. I want something bigger.
But, as I have said before, small things matter. Tiny things matter. Millimeters matter. We all want to take giant steps. Most of us even want to run. But running is just not an option for people with chronic illness.
And while acceptance of chronic illness and all that it implies is a process, in the end, those limits just have to be okay because we can’t change them. I can’t change the number of spoons I have available and I can’t change how much effort it takes for me to wield a spoon. I just can’t. All I can do is admit how hard it is and laugh and the ridiculousness of it.
And then I need to honor my strength and my tenacity to keep at it. It’s hard. It’s a bitch. But I keep doing it. I will continue to keep doing it. And that’s amazing.
Image by DeviantArt user Hudgeba778.
Yes each day I do less..Each day I interact with others less. My sister said for years she doesn’t have the energy I so get that now, I don’t have the energy for showering or making sure I have enough medicine or enough of anything…
Natasha you say it perfectly. I have two autoimmune illnesses and bipolar disorder (and S.A.D.) and the Herculean effort it takes just to get dressed some days is ridiculous.
I don’t shower every day. If people don’t like it, tough. My family gets criticized by other family members for eating out a lot. All of us have chronic illness and fatigue issues. Many times dinner is just too difficult for any of us to manage. I just told my husband this is the last time I’m cooking for Thanksgiving…and yesterday is the last time I will shovel heavy snow after a blizzard. My body just says no, and I am going to listen to it, rather than hurting myself because I feel inferior to people who don’t have the particular struggles that I do. If someone wants to criticize, they can be my guest…and don’t be surprised when I avoid them in the future.
my experiences with depression tell me that self-pity is a dangerous activity, even if it’s justified, or, perhaps, especially if it’s justified. to me it’s a loop that feeds on itself at the expense of my health, analogous to cancer.
we are, of course, human. we are entitled to feel sorry for ourselves. in the interests of mental health, i try to put a time limit on it, sometimes literally with a stopwatch. i will mourn my lost life for thirty minutes, then i will do something else. this is strictly a survival mechanism.
when i’m depressed, every little thing seems an insurmountable obstacle. right now i want to go for a jog in the woods… but it’s cold. i have to find sweats. but my bureau is stuck closed. so i need to find a crowbar to open it. but the crowbar is probably out in the shed. i could look for it, but it’s cold.
the bureau is always stuck shut. if i take an axe to it, my wife might freak, but good riddance to it. i need to run. it’s time to get serious.
Thank you Natasha for articulating my experience. Sometimes it all just feels too hard to do. I found you several months ago when I googled “why is it so hard to take a shower?” And again today I was beating on myself to try and get cleaned up before going out. Who cares? Hat and a quick swab of deodorant. Good enough. Glad to know I’m not alone.
I found Natasha from a headline she wrote that I vehemently disagreed with. Actually, I felt enraged when I read it. I have a brother who has a mental illness, and I too have something similar. He has the mania and I have the depression usually. We are both diagnosed as having bipolar disorder. Anyway, unlike my brother, I am a free person and can relate to everything written above. Most everyone I know fails to understand the monumental effort I must find to take a shower sometimes – I meant often. My brother went to prison a few months ago. It was really rough on me. He goes to jail when hes ill, whereas I go to the hospital. Doesn’t seem right OR fair even though I’m getting the better deal. My parents didn’t sign up for two kids like this. My other brother is just a jerk with substance abuse issues. I definitely feel bad for my parents. Between drudging through this week and realizing I’m pretty much alone, I about hyperventilated crying just now. I’ve started to have recurring dreams of being trapped. Some are really scary, so much so I force myself to wake up. It makes sense that I’d have these dreams because of current life events. I feel sorry for myself. When I read Natasha’s stuff I still have a little attitude, yet am thankful she writes the deepest and most raw stuff. I can relate for sure. I’m writing this with one finger to distract myself from this awful anxiety tonight. I usually dont write anything. It is helping me calm down though. I’ve got to go to sleep.
Thank you for writing this, Natasha. I can always rely on you for the unvarnished truth. I’m so happy when I get through the day and get something extra done besides taking care of me -~ like a load of dishes or wash. Washing my hair or taking a shower is monumental! For some reason I wasn’t looking at bipolar 1 disorder with anxiety and insomnia as a chronic illness and it’s my far my primary one! IBS, arthritis, a mysterious, itchy skin rash I’ve been fighting for seven months have been in my chronic illness slots. Thank you for helping me to see what is before me and why life is so difficult much of the time.
Hi Natasha, thank you so much for this last post. I am suffering the down side of bipolar and am too finding it so hard to motivate myself. I can’t seem to get myself dressed or out of my chair. I am in the throws of the illness still and started to be ill last July. Then I spent over 2 months in hospital. I just wanted to thank you so much for writing your book because it made me realize so much that what we suffer from is in fact an illness and disease. I never really looked at it that way before and used to beat myself up as though I was responsible for suffering what I have.
Unlike my friend my son and I do reach out for help and I should get a script in the morning for some medicine.
Thank you once again Natasha!