Having a chronic illness is like having a full-time job. But a lot of healthy people just don’t understand what it’s like. So, read the following list of real life struggles of having a chronic illness and you’ll be able to understand a chronic just a little better.
1. Being a flake.
Me: Hey, so I know I said I could hang out this weekend, but actually I’m not feeling so good so I’ll have to cancel.
Friend: Oh, okay. That’s fine! We can totally do it another time. I’ll call you.
*never calls* *end of another “friendship”*
Having friends is difficult to do when you have a chronic illness. We never know when we’re going to feel good, or better, so making and keeping plans is hard to do. And if you cancel plans enough times, people stop making them with you. A chronic will often get sidelined, as they sit in their house and focus on survival and recovery, we often get forgotten about. It’s tough to be always dropping the ball, never being able to be there for people when they need us. It’s hard letting people down all the time, and sometimes it’s just easier not to have friends because then you can’t let them down.
2. People giving you food. . . That you can’t eat.
Friend: I know you’ve been having a hard time lately, so I bought you your favorite candy bar.
Me: Thanks. . . I can’t eat sugar. . .
Friend: I want to make you a meal. I was thinking of lasagna?
Me: That’s so great except I can’t really do all that dairy. . . or white flour. . . or you know, fat. So. . .
I appreciate the gesture, I do. It makes me really happy that someone went out of their way to cook/bake something that they thought would brighten my day. :) But if they just went a liiiiittle farther out of their way, they could find out what I can and cannot eat. Then not only would I have the appreciation for the gesture, but I would also get to enjoy the food! :)
I’ve found it’s just a lot easier to accept whatever someone gives me, and then either throw it away or just ‘re-gift’ it to someone else.
3. Being called ‘lazy’ and ‘out of shape’.
Some people don’t understand a chronic illness. I’ve been called lazy, couch potato, out of shape, the laziest person alive, along with other comments such as “do you ever leave the house”, “do you ever leave the couch”, “that much sleep canNOT be good for you.”
I don’t think I’m lazy. I don’t exercise a lot because my chronic pain intensifies when I do. And I sometimes skip out on an event because I know I’ll have to leave early and I don’t want to make the people I drive with angry. And I always have other people open things because twisting and gripping can really hurt.
I have a chronic illness. I often do not feel well. I live with what feels like a mild and sometimes not-so-mild flu. And I have chronic pain, in all of my joints, all of the time. So really, if I do anything besides lay in bed all day, I’m the exact opposite of lazy. If I was lazy, I could use my illness as an excuse and just stay at home and mooch off my parents. But I don’t. I work two jobs and I’m taking to college classes. That’s a lot.
4. Being really picky about bathrooms.
Okay, so not to be too gross, but sometimes a chronic illness can involve certain digestive problems. Which means we may spend a little more time in the bathroom than most people do. Which makes us very picky about bathrooms.
On campus, I know where all the good bathrooms are. And I will walk further to pass up on the ones I don’t like. I know which ones always smell, which ones have long lines, etc.
Not only that, but the bathroom is like a little escape zone. If I need a break from socialization or focusing, I’ll disappear into the bathroom. If I need to take my pills and I don’t feel comfortable in the setting I’m in, I’ll slip into the bathroom and take them there.
So basically, I’m a bathroom snob. It must smell nice, look clean, have wide stalls (I get claustrophobic), a counter to help with pill taking, a clean mirror, soft lighting (fluorescent lighting makes me pale and sickly), a fan or music, lots of stalls, and lots of sinks.
And let me tell you, bathroom time is SACRED. Having someone knock on the door or talk to you while you are in the bathroom is violating the sacredness of the restroom. Whatever I’m doing in there, if I’m using the toilet or just sitting on the floor being alone; it’s my time and it cannot should not ever ever ever be interrupted.
One more thing about bathrooms: Chronics do not like the social norm of going in groups. We like to be alone. Because it’s awkward and embarrassing if we end up taking longer and we know our friend is standing out there waiting. Or if we’re retreating to the bathroom to be alone, we obviously don’t want someone tagging along, because then we wouldn’t be alone.
5. People playing down your illness.
It really gets on my nerves when people downplay my illness. And there’s a couple ways that happens. Well-meaning people will compare my chronic illness to having a flu for a few days. I realize it’s an attempt at empathy, but it fails to accomplish that. Having a flu for a few days is nothing in comparison to having a ‘flu’ for six years. Not to mention that a flu generally has two to three symptoms. I’ve dealt with a lot more symptoms at a much more severe scale. And I’ve known other people with this illness who have even worse symptoms than I do; like seriously, Lymies go to the hospital a LOT.
When well-meaning people give me ‘miracle cure’ advice. There is no miracle cure for an illness as complicated as Lyme disease. And by assuming I would have missed something so simple, you’re claiming to know a lot more about my disease than I do. It’s basically calling me dumb and my doctor(s) dumb.
Lyme disease is a complicated illness. It has both physical and psychological symptoms. It attacks every system of the body. It can get in the nervous system and cause severe pain and seizures. It can make you forget how to swallow, how to walk; it can steal your vision and hearing. It can interrupt your thoughts with graphic, scary images (a symptom called ‘intrusive thoughts’). It can disrupt your emotional well-being, causing you to be depressed over nothing or to blow your top over nothing. That’s called “lyme rage”, and it’s a pretty scary thing. Lymies have smashed car windows for getting cut off, thrown their dishes across a restaurant because the food was cold. It’s something that cannot be controlled. It can cause depersonalization, causing you to lose touch with reality, wandering around as if you’re in a daze. Lyme disease is not a simple illness. A lot of Lymies commit suicide to escape the pain, social stigma, and mental agony. A miracle cure is not going to fix that.
And Lyme disease is not the only complicated illness. Most chronic illnesses involve a lot more inconvenience than just popping a couple pills a day. It involves managing a diet, exercise, Doctor’s appointments, medical bills, symptoms. It’s not just a word typed in your medical file; a chronic illness can seriously affect your life in ways that are just not simple.
6. Small Talk
The first question people generally ask in small talk is the classic, “How are you?” This particular question poses a dilemma for chronics. Do we answer honestly? “Oh I’m fine. I just spent the entire day trying not to throw up and I’ve had a migraine for three days. . . How about you?” But to answer with a simple “I’m fine” feels like a lie. And some of us have a real hard time with dishonesty.
But if we answer honestly it puts a depressing tone on the conversation. Like when I talk about my chronic joint pain, the pity look flashes across their faces. Even if I’m being positive about it and am relatively happy, hearing that I’m in pain makes other people uncomfortable.
And then there’s just small talk in general. It involves going back and forth about their jobs, their hobbies, their love life, their vacations. But a lot of people with a chronic illness, (I’m referring to Lymies here) have a substandard quality of life. We don’t feel like going out, or we can’t. Our hobbies involve filling our pill boxes and watching re-runs of Monk. Our job is to survive. So when people ask, “what have you been up to lately?” There’s an awkward pause as we try to come up with something other than lying on the couch all day. Typically I just let the other person talk, because people like talking about themselves and it takes the pressure off of me to come up with something interesting.
Holidays involve a lot of small talk. They are also loud, and busy, and most of them are during the cold time of year. Long-distance family members come by and they want to know everything about you. “How’s the Lyme stuff going on?” Because Christmas is definitely the day I want to focus on and talk about my illness and how things aren’t going well.
And if the family stays with you, it can be difficult to retreat into a quiet place because there are no quiet places. And the food. Most chronics are on some kind of special diet; and holidays don’t allow for special diets. Have you ever tried being gluten-free at the Thanksgiving table? It’s rough. You can’t eat the mashed potatoes because they put a bunch of dairy products in it, you can’t eat the bread for obvious reasons, you can’t have the gravy because they made it with white flour even though you asked for it to be made with corn starch. You can eat turkey. And canned green beans, if they thought to bring that along with their glutinous green bean casserole. If the holiday is in your own home, you have more control over your meal; but if someone else is hosting you have no way of knowing if the food is something you can eat. You can call ahead and explain your needs, but their kitchen isn’t gluten free and you don’t want to be a bother. After the meal is worse, because you sit around watching everyone eat these delicious, fatty, sugary, deserts that you can’t have. But your Aunt Jody won’t stop insisting you try her cranberry cobbler, and you keep refusing, and pretty soon you’re known as the snob of the family.
And then there’s the infamous New Year. Nothing like a new year to remind you that another year has gone by and you still haven’t recovered.
I don’t know what it is about pharmacies, but I’m pretty sure all the ones I’ve been to have never heard of HIPAA. When it’s crowded and you’re trying to have a confidential consult with the pharmacist, he won’t lower his voice down.
I was on birth control a while back to manage my hormones. And I had a new prescription added, so I needed a consult. So after the pharmacist talks about the new pills, I started to walk away, when he suddenly calls out, “Oh! And those such-and-such pills will limit the effectiveness of your birth control, so you’ll need to use a secondary protection.” Yeah. It was that bad. I stuttered out, “I’m not taking it for that. . . ” And then I turned and ran away. Look, I know I’m a college student, but don’t assume I’m a stereotype! :(
Another time, at a different pharmacy, I was picking up three or four different antibiotics at the same time. The pharmacist actually wouldn’t give me my pills. She just held on to them and kept picking them up and putting them down and saying, “Such an interesting blend of pills!” I could see what she was getting at, so I cut to the chase. “I have Lyme Disease.” “Oh, really?!” She got all excited. I guess having a Lyme disease patient wasn’t something that happened every day. Then she starts asking me about my symptoms, and how long I’ve had it. And then she reassured me that these pills would make me feel better and finally gave me my pills. There were other people waiting in line, and they could hear the interchange. Now she’s managed to have my condition known to at least six other people I do not know. Every time I went back to that pharmacy, she has to ask, “And how are you feeling? Are you feeling better?” And she seems really confused that I’m still on these prescriptions after a year. It’s awkward, it makes me feel uncomfortable, and I wish I actually had the privacy that I’m supposed to have through the Health Information Protection Act.
9. Discreetly taking pills
“Excuse me for a minute. . .”
“What in the WORLD are you DOING?”
“It’s normal and I’m not a druggie, okay?. . .”
It’s all fine and dandy when you’re at home all day, but when you’re going out–it’s a whole different story. When and where is it okay to whip out a handful of pills and chug them down? In the middle of class? In the middle of church? On a first date? Pills jingle in purses and clack together when you shake them out. Pill carriers can have snappy lids that will echo in a quiet room. Then you still have the trouble of getting them in your mouth without people noticing the number of pills you’re taking. Injections and inhalers are even harder to use without drawing attention.
When I first starting dating my boyfriend, I would plan to eat twice. Once with him and then once at home so I wouldn’t have to take my mealtime pills in front of him. Now that we’ve been dating for almost a year, I have no problem bringing my pills with me. I can take them right in front of him. He is very supportive and cheers me one with each pill, making pill time fun! :)
10. Saying “No.”
Chronics say ‘no’ all the time. NO, I will not go to the event. NO, I can’t hang out. NO, I will not eat that food. NO, NO, NO. And every time we say it, it hurts. Because I do want to go, I do want to hang out, and I do want to eat that sugary fatty chocolatey awesome-smelling desert you spent three hours making. But I can’t. I have to say ‘no’. I need to put my health and well-being first.
So there you have it. Hopefully you understand the life of a chronic a little better. So go out there and make a gluten-dairy-soy-sugar-free dish and give a chronic a hug!
Questions? Something to add to the list? You can comment below or contact me at: firstname.lastname@example.org