What It Means When I'm Chronically Ill and I Show Up

I am a strong, smart, insanely driven, fiercely independent woman who kicks ass, takes names, never quits, and also happens to also be disabled. I work constantly, am finishing my scholastic endeavors, and try to make time for my friends and loved ones. I’m also doing my best to honor myself by practicing better self-care and resting now and again – I don’t want to relive a past burnout experience!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I know that in past posts I have gone into some detail about what life with my various conditions is like, so I will try not to get too bogged down in the details here, but I need you to understand some back story. Every single morning when I wake up, I’m in pain. Usually about a six on a one to 10 scale. Before I can go do anything, I have to pop my shoulders, knees, hips, toes, sacrum, ribs, vertebrae back into place. All physical exertion is painful. Cooking hurts. Getting dressed makes my skin burn. I dislocate my shoulders brushing my hair. On my best days my body feels like I have the flu, coupled with some crunchy joints. On my rougher days I have symptoms ranging from paresthesia (severe “pins and needles” feeling) in various limbs, allodynia (when normal touch, like my pants against my legs, or a pat on the shoulder from a friend, is excruciatingly painful), an acid and sand grinding feeling in my joints, a general deep bruised feeling, shooing pain, burning pain, to the ever-pleasant “joints that you didn’t even know were joints are apparently dislocated/subluxated” (in a state of partial dislocation). It varies from day to day.

Various foods will fuck up my digestion, with very little rhyme or reason, creating gastric pain, allergic reactions, and fatigue. I get severe headaches and migraines all the goddamn time. My dysautonomia means I’m randomly really hot or cold, my heart races, or slows way down, and other fun, disconcerting things. My workload would exhaust a normal, abled person, but with my body being in a constant state of “overdrive,” having to function at such high pain levels, I’m doubly exhausted by the time I get home…where I always have more work and school-related work waiting for me.

There’s no comfortable position to sit in, or stand in, or lay down in. Recently my partner said “get comfortable,” encouraging me to sit down and relax, and without even thinking I laughed, said, “I haven’t been comfortable in years!” Then I started crying.

Eventually it’s time for sleep. Falling asleep in pain is hard. Staying asleep in pain is hard. And if I do manage to sleep through the night, it’s not quality sleep. So I wake up the next morning exhausted and in pain. And the cycle starts again. I compensate by drinking a lot of water, and a lot of coffee. Doing just the bare minimum some days is a huge accomplishment. Getting through a work day always makes me feel a little like an utterly exhausted superhero.

Stop it now, don’t feel bad for me. This is all just solid evidence that I’m a complete badass!

OK. So we have made it through one standard day. This includes waking up, breakfast, getting ready for work, going to work, doing work, eating lunch, more work, coming home, work, dinner, work, pass out from exhaustion – and sometimes from dysautonomia. But on rare occasions, I like to actually do things other than survive the day and work. But I’m limited on the extra things I can do. They require a lot of me in the moment, and will kick my ass the next day for sure (and for a few days after, probably)!

Because of how much it demands of me, I have to be super choosy about what I do. I have missed more events, workshops, lectures, plays, operas, shows, conventions, vacations, holidays, birthdays, weddings, girls nights and reunions than I can count. Sometimes it’s because I’m a workaholic and I’m often at my office 8 a.m. until 7 or 8 p.m. Then I go home to work more. But equally often, if not more, it’s because as much as I’d like to see your play or go to your gallery opening, my body is just shutting down and I physically cannot. Even with mobility aids. Or it’s because, as exciting as that trip to Salem, upstate New York, or Vermont sounds, I know that I can’t sit in the car that long without being miserable. Or I’ll be in pain for days after the trip and I have to get shit done. Or we’re going to be staying on someone’s pullout couch and I physically cannot. So I usually say I have to work, money is tight, or I’m not feeling well, and gracefully bow out.

But as much as I am a socially anxious introvert who is much happier with her lab equipment and books than with people at parties, I do want to do things. I want to go see movies in the theater! I want to catch Shakespeare in the Park. I want to go to your talk, gig, or just come over after work and hang out. I really do! Because I like doing things. I like expanding my knowledge and experiences, and I especially like supporting, encouraging, and spending time with the people I love. But it’s hard.

Since I got sick, I’ve lost a lot of friends. And a fair bit of family, too, though for somewhat unrelated reasons. People get tired of inviting you to things, asking you to come over, making plans, and you either saying “I can’t” outright, or having to cancel or reschedule. I have more than once heard through the grapevine how annoyed someone is that, “Farrah is impossible to make plans with!” I’m sorry. I’m so sorry! It’s not you, it’s me. Because if it was you, I’d tell you. I’m very direct. I’m way too tired to play caddy games. Ain’t no one got time (or energy) for that!

So, I guess what I’m trying to say is, I need you to understand something. Literally everything I do, from breathing on up, is exhausting, painful, and hard. I often struggle to make it through the day. So, if I come to your event – lecture, gig, party, what have you – I’m there because I want to be. Because I enjoy whatever the subject is. I’m far to exhausted to do anything I don’t want to do. I don’t do things out of obligation or guilt. I just don’t. I’m there because I want to support you, because you matter to me. It’s a big deal!

I’m not saying I’m a big deal – I’m literally no one of any consequence. But it is a big deal for me. It requires so much of me. I will feel the repercussions for hours to days, depending, and more often than not I am choosing going to your show tonight over doing three other things for the rest of this week. It’s fucking hard! It gets harder when bad weather or distance travel is involved. It’s also hard when I have to prioritize people.

Example: I’m having a rough week. I can only do one extracurricular thing this week. My dear friend is having a show that I would like to attend, I’d get to see them, enjoy my time, and support their career. But another dear friend has invited me to hang out and I haven’t seen them in a while and I feel bad, I miss them, and they’re having a tough time right now. Who do I spend my “spoons” on? How do you prioritize people? It makes you feel like a shitty person. The super shitty person feeling is when you do prioritize people, then when the day of whatever event you chose arrives, you feel so much like death that you end up not going at all. So you’ve let down everyone.

But getting back on track here, here’s the moral of the story: I am so sorry I don’t have more to give to you. I swear to deity of your choice that it’s not personal. I just am on the brink of collapse at all times. I also want you to know that it’s a really fucking big effort for me to make it to things, so if I show up at your event, I want you know that that’s how much I appreciate and value you and whatever you’re sharing.

I don’t want your pity. Don’t you dare pity me! I’m amazing. I am basically an X-Men, as someone once pointed out. Hypermobile, heightened senses, insane ability to adapt to extreme situations, cool mobility aids. Don’t feel sorry for me. Please keep inviting me to things! But please understand when I can’t make it, it’s because I truly can’t. And, equally important, know that when I make the effort to be there, know what that means. Know how much it requires of me. How much I obviously value what you have to offer, as an artist, a scientist, an incredible person. Please know that when I make an effort to be there, it means something.

Follow this journey on Work Shark.