Why do we let our illness props embarrass us?

November 10, 2013

The other day I was talking to someone who often carries a pillow with her. Due to a back problem, she needs the pillow for sitting in certain kinds of chairs. She said she’s embarrassed to be seen carrying it around. I was surprised. Another day I Handicapped Parkingwas talking with a friend who’s embarrassed to park in handicapped spaces. She knows she needs them, but she looks healthy, so she worries about what other people will think. I tried to encourage her to get the pass, but she refused. These are two stories, but there are so many others. I hear these kinds of things all the time.

ENOUGH!

I’d like to say that I never let those things embarrass me, but it wouldn’t be true. I’ve come a long way, though! Occasionally I worry about what other people think, but then I remember that my health is more important that what strangers think of me. And besides, who are they to judge?

It helps to remember, I’m not the one who should be embarrassed! And neither are you!

If I need to ask for a seat on the train, why I should I be embarrassed? The people who should be embarrassed are the ones who don’t immediately offer up their seats. The people who should be embarrassed are the ones who don’t get up for the pregnant lady with 2 kids and groceries who steps on the train. The people who should be embarrassed are the ones who listen to music so loudly that it bothers other passengers.

When I park in a handicapped space I am very aware that I do not look like I have any disability. But why should I be embarrassed? The people who should be embarrassed are the ones who judge me without knowing me. The people who should be embarrassed are the ones who “borrow” a relative’s pass even though they themselves don’t need it. The people who should be embarrassed are the ones who park horizontally, taking up 3 spaces in the lot just so their car won’t get dinged by someone else’s door.

Sometimes I need a wheelchair when I’m in a place that involves a lot of walking. Sometimes it gets in other people’s way. But why should I be embarrassed? The people who should be embarrassed are the ones who get annoyed at me and say rude things. The people who should be embarrassed are the ones who don’t take 2 seconds from their day to open a door for me. The people who should be embarrassed are the ones who are so preoccupied with whatever they’re reading on their smartphones that they bump into other people.

Needing some sort of help for the sake of our own health and well-being is absolutely, positively, without doubt, in no way any reason at all for embarrassment. Rude, inconsiderate behavior is. So be a good, nice, helpful person for others and you’ll have no reason to be embarrassed. And if someone says something anyway? Do what I do: simply, calmly, and matter-of-factly tell them why they’re wrong. Then walk (literally or figuratively) away with your head held high.

10 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Kindness, Limitations, Parking, Symptoms | Permalink
Posted by chronicrants

When I’m sick after all

November 6, 2013

The thing about having a chronic illness is that I often feel like I have the flu or something like it. It sucks, but I can’t do much about, so I accept it. And I think that acceptance really affects how I handle having something that isn’t part of my chronic illness.

I used to get a sore throat, the chills, and fatigue, and assume I had a bug. It took me many years to figure out that those symptoms had more to do with my thyroid than with a virus, so even though I felt lousy, I didn’t have to worry about being contagious. Unfortunately, that attitude led me in the wrong direction last week. I had what I thought was an especially bad IBS attack for the first time in a long time. It didn’t resolve as quickly as usual, so I starting thinking that maybe I was having a bad response to my new thyroid med. Uh oh! I decided to wait a few days to see what happened. In the meantime I went on with my life. It never occurred to me that I had a bug.

Three days later I was having a really rough time. It was late at night, and I felt truly dreadful. I decided that enough time had passed and in the morning I called my naturopath. That’s when I got the news: I had the exact same symptoms as many of her other patients. There’s a stomach bug going around, it lasts about a week, and I had it. I needed to spend several days at home, resting and not eating. Oh crap!

I immediately thought about the unusually high number of “vulnerable” people I’d been around over the last several days. This was unusual, even for me. I was with my friends and their 4-year-old. I spent time with my 90+ grandfather. I waited with a friend who was in labor, while her husband rushed to get there. I visited with a friend who was recovering from knee surgery. *(&$#^#!!!

I couldn’t do anything about the past. I just hoped no one I had been with got this bug! (Update: So far, go good. No one I was with has reported symptoms, so I don’t think they caught it from me. Yay!) I was so used to not being contagious when I felt lousy that I went on with my life. A “healthy” person would have probably known immediately that something was wrong, and they would have stayed home while feeling crappy. I hadn’t done things ideally in the past few days. But looking to the future, I had the advantage.

Yes, I was disappointed to cancel my plans for the next few days. There was a lot I was looking forward to, but I’m also used to canceling. I didn’t get upset over it. I didn’t even look at my “to do” list. I knew there was nothing on there that couldn’t wait until I was better. Sure enough, a car issue, a cell phone issue, balancing my bank accounts, cleaning up the apartment, writing to my doctor to correct mistakes in my medical record (that’s a whole story in itself!), getting my orthodics adjusted, buying new glasses, getting my friend a baby gift, and taking out the trash, among so many other things, still need to get done now that I’m feeling better. And you know what? Waiting a few days to do them didn’t hurt anyone or anything. In the old days, I would have tried to do some of that while I was sick, or I would have at least worried about it all needing to get done. Now I know better.

Resting is sort of a skill. It can be hard to rest if you don’t have the tools. After years of chronic illness, though, I’m an expert in this area. I have the mindset. I knew I had to take it easy, so I did. I didn’t try to push myself to do more than I should. No problem there. I also have everything I need. I had plain rice in a cabinet and I quickly made some. I pulled ginger root out of the freezer and grated it into hot water. I had apple juice in a cabinet. I put on cozy, comfy clothes that I keep specifically for lounging around the house. I pulled out some relaxing knitting and crochet projects. I had plenty to watch on the dvr and, in case that got boring or not relaxing enough, I had a stack of feel-good moves on my bookshelf. I had an interesting, fun book from the library. To top it all off, I had the large, soft, oversize throw blanket that I cuddled up in for the better part of each day. Yup, no one knows how to relax like someone who’s forced to do it constantly.

So did it suck having to slow down, cancel stuff, and stay indoors on sunny days (especially knowing the lousy weather that’s headed our way)? Yup. But I’ve done it before and I know I’ll have to do it again, so I didn’t let it get to me. I’m just glad that it’s over now, and I can started to get things together again. I have writing to catch up on here, lots of laundry to wash, and that whole “to do” list to catch up on. But at least I’m no longer doubled over with nausea. I guess it’s all relative.

1 Comment | Expectations, Frustration, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why is dinner so difficult?

October 25, 2013

I know the title of this sounds whiny, but I don’t care. I feel whiny.

I was just talking on the phone to someone who worked a full day at a job, then worked out at the gym, then finally got home to rest for just a bit before having to suddenly go out and take care of a sick family member. I spoke to her just after she had gotten home and she was completely exhausted. She was having trouble just getting up and moving around. She was completely worn out.

So was I. That’s why I feel whiny. What did I do today? I had a quiet morning. I met a friend for lunch. We walked over to an eyeglass store and I tried on glasses while she gave her opinion on each. I came home. I read, checked Facebook, answered emails. I was doing pretty well until dinner. Some days cooking isn’t too bad, but this wasn’t one of those days. The oven was on and it was too hot, even though the windows were open. In a tank top, I was sweating. I made something new, and it took too much mental energy. I had to leave the kitchen to sit and rest twice. And that was just preparing the meal. Never mind the effort to eat it or, even worse, wash the dishes.

I’m lucky that I can prepare meals most days. I know that. But still, sometimes I just get so frustrated that cooking one dinner can exhaust me as much as a healthy person on their most hectic, stressful day.

What daily (or near-daily) activity wears you out? What do you feel is so much more exhausting than you ever thought it would be?

6 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Sometimes I want someone to get as sick as me

October 17, 2013

I’ve always been a kind, generous, compassionate, empathetic person. I know that sounds like bragging, but it’s just the truth. I always want to help others and I never want anyone to feel sick or hurt in any way. A friend posted a picture on Facebook today of circus elephants and all I could think was, “Those poor elephants!” So you can imagine how hard it is for me to admit that sometimes I want others to get as sick as I am.

For a long time I’ve fought this. I’ve tried to tell myself that I didn’t really mean it when I thought this way. But that wasn’t true. The truth is, there are some people who I want to feel bad. I don’t feel this way about all people, of course, but it’s still there.

But when someone says that all people wanting prescription painkillers are just trying to abuse the system, I want them to feel horrible, chronic pain. I want them to be in pain every single day, horrible pain, can’t-think-properly pain, want-to-cut-my-arm-off pain. I want them to know it will be for the rest of their life. Then maybe after a few weeks, after they’ve had to deal with the physical, emotional, and social fallout, then maybe they can feel better.

When someone suggests that I should really be well enough to work, that a little exhaustion can’t be that bad, I want them to experience my exhaustion. I want them to miss friends’ weddings, fun outings, living life, having a job, feeling young, feeling independent. I want them to worry about ever dating, getting married, having children, having pets. Then after they’ve fully experienced the horribleness of it, then maybe they can get better.

When politicians say that the already underfunded Social Security Disability system should be cut back because of fraud, I want them to get so ill that they can’t work, apply for benefits, get denied, appeal, get denied again, and then question how they will pay rent, buy food, and live in general. After they’ve fretted and suffered for a while, then I suppose they can get better.

When someone says that we don’t need healthcare reform in this country I want them to get really sick and try to get care. I want them to see that even with health insurance, it can be very expensive. I want them to see that health insurance doesn’t cover it all. I want them to see how hard it can be to get health insurance and how easy it can be to lose it. I want them to spend dozens of hours fighting with insurance companies instead of using those hours to get well. Then they can get better.

When someone judges me, thinks that I’m not too sick to do the things they can do, thinks I shouldn’t be out of work or “acting” sick, I want them to get exactly what I have. I want them to feel the exhaustion, pain, and fear, all while “looking good.” I want them to be judged and to have to defend themselves constantly. I want them to break down crying because it’s all too much. Then I suppose they can get better.

You see, I don’t want these people to feel as sick as me forever. I’m actually not all that vindictive. But I want them to feel it for a while so that they understand. So that they have some compassion. I just want understanding and I really don’t think anyone can understand unless they’ve been through it.

I hate to admit all of this. Today was the first day I admitted my true feelings to myself. Maybe it makes me a horrible person, maybe not. But it’s how I feel and I won’t pretend otherwise anymore.

19 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

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