Chronic Illness and Guilt

I spend a lot of time feeling guilty about the consequences of my various illnesses. My boyfriend and I quarrel a lot lately–there’s tension because I need a lot of help and I’m bitter about it, I’m very moody because of the pain and not easy to be around. I feel like a financial burden to my family. I miss a lot of work, sporadically. It’s difficult to plan events with friends and family when I’m having flares, and I never know if a migraine will arise. My boyfriend and I can’t travel much together because of my limitations, nor can we engage in activities that might be tremendous fun if not for my body… like rock climbing. People around me see me suffering and I can see it hurts them. This might be the worst causes of guilt and I don’t think there’s anything that can be done about it. But if you’re loved–and we should all be so lucky–there’s no way around this.

None of this is my “fault” exactly, but it is. It is my fault, I’m the one causing all of it somehow. Right? This is the guilt I believe every person who’s chronically ill is tormented by to some extent. If you have good support from people around you, I think it is survivable guilt. I’m lucky; my boyfriend often tells me he’s happy to help me and understands none of this is my fault, and I can tell he actually means it. My parents always offer “any help” they “possibly can” and never blame me. But I still feel guilty. What do I do with all of the guilt?

Step 1: Acknowledge it: I feel guilty. I feel really, really guilty because I’m sick and it has all these consequences, and I don’t like them. I feel like a monster!

Step 2: Feel it: UUUUGHHHHHHHHHHHHHHHHHh

Step 3: Distraction/comforts when necessary: Netflix binging, going out to the movies, pizza, work, games, teasing the cats with their favorite rainbow wand

Step 4: Rationalization: Okay, I’m sick. None of this is actually on me. I didn’t purposefully make myself sick, or do anything to get sick. And I’m only seeing ONE MILLION doctors and taking meds, I lost weight because my doctor told me to, I’m seeing a therapist to work on stress management, blah blah blah. I’m trying to be my own best friend here (ew). I’m not perfect but damn it, I’m doing a pretty good job. I’m even still working, which isn’t easy. So I might feel guilty but I don’t deserve to feel guilty.

Step 5: Continue to feel guilty: Wait, what? DAMN it. I’ll try again tomorrow.

Neverending Story

When the Rasuvo (methotrexate) injections began working maybe a year and a half ago, some naive part of me decided I was “done” with having to deal with medicating rheumatoid arthritis. Well THAT was very stupid.

I am feeling pretty fucking depressed right now. I’m trying to allow myself to fully feel it so I can move through it and not be bitter or feel pity. The methotrexate isn’t working much anymore and I’m probably going to have to try another medication for the RA soon, presumably a biologic. Many other RA people would say, “DUH, GENIUS! That’s common!” but I really thought I’d hit the jackpot with methotrexate. It was working so well for me. I was feeling pretty good… good enough to work full time and almost function as if I were a 70-year-old in amazing shape for her age (I’m 33). Instead of this crap. C’mon. I feel really dumb right now for not realizing that luck runs out for everybody. I’m not special! Now I’m scared about trying new meds, the side effects…. Biologics aren’t fucking around. But neither is my immune system right now. It’s pretty angry at me.

So my body hurts a lot, everywhere, it’s difficult to deal with the pain emotionally. It’s just like… I can’t get away from it and I would never hurt myself, but when people with severe chronic pain hurt themselves, I understand it. And I think that’s the key to empathy. Don’t be afraid to face these hard feelings and say them out loud. This kind of pain will make you crazy if you’re not careful–who could be blamed?! I think I’ve only retained some shred of sanity because the sun came out a couple times (I adore the sun… warmth on my skin is like an elixir on me), and I had a couple hours here and there of lower levels of pain. But then last night I started getting a severely sore throat. It seems I have some kind of upper respiratory infection. Are you KIDDING me right now?! So I had to take off work. That makes me feel like an asshole. I keep feeling guilty for being sick. Not helpful. A few days ago I had to take a day off work because I got FOOD poisoning. It’s like some bad-health demon is following me around lately… get away from me!!!! All my chronic health problems are ENOUGH.

It is painful to type. This is a bummer because writing and keeping connected both help. I live through social media much of the time since I never know if I will be able to go out when I’m sick. My forearms are really shitty lately. I need this space.

WELL. I guess here marks a new chapter, and when I start on whatever new shit drug I’m taking I’ll document what that’s like. Hopefully it’ll be of some help to somebody, if not to myself.

Stand Together, Be Strong

After our election, many of you may be scared. I am scared. I love you and care about you, my friends with chronic health problems. This impacts us directly. It impacts so many people.

I am fortunate because I work full time and have health insurance through my work. I know how lucky I am to be able to do this. Many people are not in that position. If you have health insurance through Obamacare, you may be wondering what your future looks like… I do not know the answer to that question. You have every right to be scared and depressed.

However, I can tell you that our country is filled to the brim with people who are not satisfied to sit around while you get your healthcare taken away from you. People who are scared with you. Depressed with you. And absolutely, unabashedly motivated. People who are gearing up to work for you. Work, Work, Work.

While many have been ignored, trampled upon, mocked, belittled, set aside, ostracized, demonized, and marginalized…

While many have fought for Civil Rights, only to fear having them stripped away…

While many have been climbing, finding themselves only halfway up, and wonder if they will be thrown off the wall…

No longer will we be silent. We won’t be quiet. We won’t be tired. We won’t be afraid for long. And no onlooker to these wrongs will stay immobilized. I look to the good people I know and every single one of these people is brimming with an energy I have never seen. Buried beneath the despair and exhaustion that comes from days of nausea and sleep deprivation, waiting to be directed positively towards a society where its citizens don’t have to worry about their healthcare. Where its people aren’t afraid because of the color of their skin. Where members of its community can express their love for one another freely, without prejudice. Where we embrace difference and newness instead of fear it, remembering our founders and ancestors. Where we cherish and care for our surroundings. Where genders are treated equally. Where people who serve this nation are honored. And where money buys things, not power.

This. Will. Not. Break. Us.

Coffee + Depression

When you have chronic pain, you often struggle with depression. It’s important to face it head on. Don’t ignore it. Depression is real, it’s serious, and it can be deadly. It can get out of control. Depression caused by chronic pain can get particularly ugly, because those of us with chronic pain often know that the pain will not be going away–ever. There’s no relief in sight. Or, if we get relief, it is fleeting. That’s a depressing thought. It’s difficult to get around that, and one has to figure out how to make some kind of peace with it. Once, I wrote this short piece describing depression, and what it feels like to me. I hope if you suffer from depression, you know two things: 1) you are not alone. 2) you need help… get it.

Depression is seeing a cup of coffee.  Saying to yourself in your mind, pick up the coffee.  Pick up the god damn cup of coffee.  What’s wrong with you?  You can do this.  Pick up the coffee.  It’s not that hard.  You can do this.

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Then you pick up your stupid cup of coffee and say, hold it by the handle.  You can do it.  Turn the cup around and hold the fucking handle.  Just hold a cup of coffee like a normal person, god damn it.

Okay now move your arm up and put the cup up to your mouth.  Just get it in the proximity of your face.  It’s 100 pounds but you can do it.  Look at everyone else, they bring cups up to their face all the time.

Touch the cup to your lips.  Get it to your god damn lips, you lifted it up near your face, now get it to your lips.  Or move your heavy head towards the cup so your mouth meets the cup.  Or both, whatever it takes.  Just get the cup to your stupid lips.

Alright you did it, open your lips.  Very good.  Take a sip of coffee.  Take a real sip of coffee.  That’s not a sip of coffee, that’s like one droplet of coffee.  Take a normal-sized sip of coffee that counts as a real amount.  Okay, it’s in your mouth.  You did it.  Swallow it.  SWALLOW IT.  What is wrong with you, you usually do this every day.  Swallow your fucking coffee.

Congratulations, you’ve swallowed some coffee.  It tastes mediocre.  I guess, I don’t know.  Maybe it’s good.  I don’t know what’s good right now.  Put the mug down.  I’ll try that again in a half hour.

The Absence of Hyperbole

Well the blogger “Allie” in charge of Hyperbole and a Half is back!  For anyone who isn’t familiar with this particular blog, it covers a wide range of topics, especially things having to do with writing and, more recently, depression.  She also uses self-drawn cartoons to illustrate points, which almost universally make me laugh.

The most recent post is the long story of her recent bout with depression that stopped her from blogging for a long time.  I have had many a depressive periods and I can say without hyperbole that this is probably the best descriptive of the disease I’ve ever encountered from a sufferer.  You really, really need to read it if you have any interest in any of the following items: 1) things that are funny; 2) things that are sad; 3) things that are funny and sad at the same time; 4) things that have to do with depression and/or suicidal thoughts; 5) cartoons; 6) sarcasm; and, finally 7) unicorns.  http://hyperboleandahalf.blogspot.com/

My personal response to Allie’s recent blog post is because of the chronic pain shenanigans.  I notice that the pain has made me depressed… at times, deeply depressed.  At other times, it makes me a horrible bitch monster.  The times in between leave me abnormally empathetic and I am not sure I enjoy understanding and identifying with others so closely.

Point is, Allie talked about a few things I could identify with that had to do with the depression that comes with chronic pain (or, I bet, a chronic illness of any kind).  All of it meant something to me, but it was how she felt about dealing with other people that really struck a chord.  For example, she described trying to act like you are having normal emotions when really you’re filled with a pile of either nothingness or so many emotions you aren’t sure exactly how to pick the correct one when someone is talking to you and expecting an emotional response.  “I could no longer rely on genuine emotion to generate facial expressions, and when you have to spend every social interaction consciously manipulating your face into shapes that are only approximately the right ones, alienating people is inevitable.”  Amen, sister, amen.  It’s really a kind of self-centeredness… I don’t think of myself as selfish (who does?) but I do know that the incessant pain makes me think about myself more than I’d like.  In a way I am selfish, and sick people are selfish.  We can’t help it, though, if that’s a comfort to anyone!  Then someone suddenly expects you to respond to them in a conversation about their 9-year-old kid’s stupid soccer game with some kind of happiness (“Oh BOY he kicked a ball into a net, that’s SO THRILLING FOR US ALL“) just as you’ve been telling yourself you’ll be able to get through one more day and that things will get better somehow.

Maybe there’s something to be learned from this, something encompassing more than just people with depression or people in chronic pain.  Expecting people to have “normal” reactions to things when they are going through something difficult is irrational, and since people are often silently suffering, I think we should all generally have a bit more patience and not judge others when their responses to conversations or events seem atypical.  But, uh, when you know someone is suffering to some great extent, give them a break, man!

As a sort of homage to Hyperbole and a Half, I drew a little picture of myself that represents some of what I’ve written about above.  Perhaps I will include more such pictures in the future, who knows.  It was cathartic creating it.

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Uh, so have a nice day!  😀