In my day to day wandering I come across many comments and misconceptions from friends, family, and the general public. Most are harmless assumptions, though on occasion some can really cut to the bone with frustration. Things like assuming my illness is like someone dealing with a nasty cold, or if I got more exercise surely I’d feel better, and other thoughts to that affect. I don’t want to sound like a broken record but it’s really frustrating and often insulting to hear something like this. I know it’s often said in a misguided attempt to be “helpful”, but I need to reiterate that its not.
About a year ago a girl I knew and I were talking online and I mentioned that I’d had a terrible migraine the night before. Migraines are few and far between for me, so I had been explaining how truly awful it had felt and how drained I was from it. It had completely incapacitated me, I had been stuck in bed for hours with a damp cloth on my forehead in a cold dark room. She concurred that migraines were indeed awful and then said
“I know exactly how you feel, I get headaches sometimes and I don’t want to go to work either.”
Um, no… That’s neither what I said or meant… I understand she was a bit naive and young, but her comment at the time really ticked me off.
I corrected her stating that it wasn’t just like getting a headache now and then. That when you have a chronic disease everything is intensified, worsened on a larger scale, and that for most of us chronically ill people, we’d prefer to literally be anywhere than in bed sick, including work. She didn’t get it.
This is one of many misconceptions that I’m faced with daily. The idea that I’m only sick because I’m tired, or I’m not getting enough exercise, or I need to be vegan.
No, no, no, no. No.
I’ve compiled a list of the most recent infractions..
#1. Me: “I’m tired.”
You: “You’re probably tired because you’re not getting enough sleep.”
This one really irks me. You’ll be surprised on how much sleep I actually get. If I’m not battling medicine induced insomnia then I’m usually sleeping 8-10 hours a night. But that still won’t be enough. If I’m having an active day (errands, drs appointments, seeing family or friends) I’ll need a pretty big nap in the afternoon to get myself through the rest of the day and not crash out by 5pm. That usually means a 2-3 hour nap. But I never truly feel rested. Fatigue from a chronic illness is not the same as a regular healthy person being tired. You can take a 30 min nap and bounce back and be fine. Most of you don’t even need that nap. But for someone with a chronic pain disease, the littlest of tasks can be exhausting. On bad days I’ve been tired just getting out of the shower, or cleaning the litter box. So please do not tell me I need more sleep.
#2. Me: “That walk really tired me out.”
You: “That’s because you need more exercise. You’d probably not be sick if you exercised more.”
While parts of this statement is true, it’s not the full story. It’s common scientific knowledge that if the body is exercised regularly you will feel healthier. But exercise for me is not the same as exercise for you. I have a set amount of spoons each day (reference from Christine Miserandino’s Spoon Theory) and exercise can be incredibly challenging. It’s not that I don’t want to get exercise. I’d LOVE to hit the gym and do an hour of cardio, lift some weights, climb the stairmaster for a few, hell even take a spin class. But I can’t. I have to be extremely careful with what I do to my body. A session at the gym like I just described could put me in bed for a week if not executed properly.
I don’t have the energy or stamina like I used to. Some days I wake up with a lot of energy and can go for an early morning beach walk with my mom for a half hour. But then I must rest for an hour or two after. A day full of errands can put me on my ass the same way a marathon may affect others.
One hour of swimming in the ocean may feel wonderfully fresh, but I’ll have to make time for a 2+ hour nap that same day in case my body crashes.
Remember, it’s not that I don’t want to exercise, get in shape, and lose the weight, because I do. I just have to be more careful than you.
#3. Me: “Time to take me medicine.”
You: “You should quit taking so many drugs.”
Wow, when did you get your doctorate?
I wish people would stop telling me I take too many drugs. It’s no one’s business which pharmaceuticals I’m currently taking and why. Once again, unless you’re my doctor, it’s not your business. The medications I take are a very thought out combination of anti-inflammatory, pain killers, corticosteroids, and vitamin supplements that my doctors have carefully prescribed so that I can mostly function on a daily basis. Dropping these medicines cold-turkey as many have suggested I do in order to “truly be healthy” could actually kill me. In fact my doctors and I have attempted to taper my corticosteroids dose down to zero to stop the mass weight gain three times now. Twice I landed in the hospital with major withdrawal symptoms that make a migraine look like a trip to Disneyland. So, again while I appreciate your concern, please keep your thoughts to yourself.
#4. Me: “I’m so hungry I could eat a cow.”
You: “You should really go vegan, and eat smaller portions.”
I love food. Anyone who knows me knows I’m a foodie. I love cooking, I love eating, I love taking pictures of it, you name it I’ll eat it. So when my body is repelling food it’s so sad for me. Also, since I never know when my food is going to make an encore appearance in my mouth I sometimes eat a little extra. Or I’ll eat the foods I love because I know they won’t be in my body that long. I understand your concerns on diet and exercise, but I’m actually following my doctors orders. “Eat what you like”, they tell me. “Eat larger meals if necessary so your body can get more energy.”
Ok, doctor, if you say so. And I really do mean that.
So here I am diligently following doctors orders. I’m not on a food binge bender. I’m just trying to survive over here. Trying to live, same as you.
So would you mind cutting me some slack? I really am doing the best I can over here. All I need is your support, preferably in the form of hugs, kittens, and warm chocolate chip cookies.