Having a chronic illness isn’t brave

June 3, 2016

I have seen many brave things, either personally or on the news. I’ve even done a few myself. Having a chronic illness is not one of them!

I hear it all the time, and I’m guessing you do, too. It’s some version of “You’re so brave to deal with all of that!” or “She’s so brave to be in that wheelchair.” Oh really?!?

The last time I checked, bravery had to do with making a choice. You make a choice to put someone else’s safety above your own. You make a choice to do something scary. That’s brave. Depending on the situation, it might even be admirable.

But I didn’t make a choice to have chronic illnesses. Most people don’t. They don’t make a choice to use a wheelchair or walk with a limp or lose their vision. These are the realities of our lives and we deal with them the best we can, but we don’t chose them.

The argument then is that I’m brave for the way I handle it all. Again, I must ask: oh really?!?

What are my options? Yes, there are other ways I could handle this. And let me tell you, it wouldn’t make a difference. I’ve been called brave for putting on a smile and pretending I’m fine. I’ve been called brave for crumbling and saying that I feel like I can barely manage it. I’ve been called brave when I look completely healthy. I’ve been called brave when I’m in a wheelchair and the pain shows clearly on my face. It doesn’t matter how I handle my illnesses and their symptoms, at some point someone uses the B word.

You might wonder why I care. And the truth is that mostly I don’t. Most days I don’t even think about it. But in the moment when someone calls me brave, I bristle. When I see someone else called brave for simply being, I bristle. It bothers me because I don’t want to be put on a pedestal. I don’t want to be thought of as special or different. I want to be seen and recognized for who I really am and for what I really deal with.

This shit is hard! And I’m not special. I have to deal with it the same way anyone else would. Saying I’m brave implies that I have some special skills or personality trait that makes it easier for me to handle everything. “What a difficult thing to deal with, but she’s so brave, look how well she’s handling it!” No, I am not handling it in any special way because I’m brave. I’m handling it the best I can because that’s all any of us can do. Because that’s what I’m sure you, dear speaker, would do if you were also in my situation.

I look around the room at my many friends with chronic illness. Some have had dozens of surgeries. Are they brave because they had dozens of surgeries they never wanted? Some have kids. Are they brave because they had kids? Some weren’t able to have kids. Are they brave because they weren’t able to have kids? Some have jobs. Are they brave because they have jobs? Some can’t work. Are they brave because they can’t work?

Or are they all just doing the best they can?

Because really, what’s the alternative?

But the worst part of all is that sometimes, in a small part of me I don’t like to admit to, I feel proud when someone calls me brave. Because in that one small way, it’s a tiny bit of recognition of just how hard I work to get through each day. And maybe that means I’m a bit brave after all?

How do you feel when someone calls you or someone else with chronic illness “brave”? Do you like it? Does it bother you? Please comment below!

20 Comments | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Pain, Rants | Tagged: , | Permalink
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When will I see you again?

May 26, 2016

Every time someone moves away I wonder if I’ll ever see them again. It didn’t used to be that way.

I used to travel a lot. If I was home for a month, I got antsy. If I was home for 2 months I

Maine

That place in Maine

intentionally made plans to get away. Sometimes getting away was a short overnight somewhere nearby and sometimes it was a bigger trip. Twice each year I visited my grandparents in New York. Twice each year I visited my other grandparents in Florida. Once each year I took a week-long vacation for myself. I visited friends. I spent many lovely summer and autumn weekends in Maine every year. And to me, that was normal.

Sure, it was tiring. But it was manageable. I could always rest the next weekend, right? And money wasn’t an issue. I was working then, and most of my trips were really cheap. My grandparents paid for my flights to Florida. I stayed with family and friends almost everyplace I went. I probably spent $500-$1000 on travel each year and loved it all.

020BedouinCamp1

Yeah, I rode one of those

But that was then. This is now.

Now I can’t imagine getting on a plane. I used to fly 3-5 times per year (including business trips) and now I haven’t been on a plane in over 5 years, since January 2011. No matter how I think about it, the idea of flying seems impossible. Maybe, maybe I could manage it if I flew business class. But there’s the money issue, too. I’m not working. $500 is just too much to spend on a plane ticket for a coach seat, never mind the added expense of a business class ticket.

Local trips are also hard. I still visit friends sometimes, but only the closer ones. Even visiting my friends and family in NY feels too difficult. I can’t drive that far anymore (only 4 hours from here.) I want to take the train, but it’s not cheap. And what would I do when I got there? The subway stations all have way too many stairs. It’s a walking city. How could I manage it? Not to mention, if I took the train I wouldn’t be able to bring a lot of food with

Grand Cayman Underwater 24

Me petting a stingray – they’re softer than you’d think!

me, and that makes me nervous. I’d have to cook in a non-gluten-free kitchen! And with all of the travel, I don’t think I’d have the energy to do much once I got there. It would even be hard to get between friends in Brooklyn and friends in Manhattan. If I’d feel so miserable and could do so little, what’s the point in going? And that’s just a short trip to NY. That’s why I haven’t been down there in 2 years, even though one of my closest friends lives there. It’s why I didn’t visit my grandfather in the last year of his life. Thankfully, we had many fantastic visits in all the years before that. (My other grandparents are no longer alive, either.)

I used to love those trips to Maine. My guess is that I could still manage those. It’s a shorter drive and I could bring food in the car. But the house I stayed at was sold and I don’t have free accommodations anymore.

I do still visit friends who are fairly close, but not as often as I’d like. And that’s it. Mostly, I stay in town. I don’t get antsy. I’m too fatigued and full of pain to be antsy about it. Still…. I miss travel. I miss exploring. I miss the new sights. I miss the new cultures. I miss the adventure.

And mostly, I miss my friends.

It hit me again today. A friend, who also has chronic illness, is moving back to her hometown in England. Will I ever see her again? She said I should come visit her and have a nice long stay. I’ve never been to northern England and would love to see it. But could I manage the flight? I don’t know that I could. It’s a sweet offer. I’d love to go. But…

Coincidentally, in less than 24 hours a friend will be here. I haven’t seen him in years. We used to visit each other every couple of years, with me going to him more often because I used to live in that city and I still have many friends there. In fact, that last flight I took in January 2011 was to visit him and those other friends. I miss them all. Lucky for me, he’s coming to visit. But the others, for various reasons, haven’t visited. They keep telling me they’d like me to visit. I try to explain that I can’t, but they just don’t understand. I know they mean well, but their invitations are painful. I want to visit. I’d love to! But I can’t. Not without doing damage to myself.

I’d like to think that I’ll travel again some day. It might not be the same kind of travel that I used to do, but just quiet trips to visit friends would be lovely. I know that other people with chronic illness can do it. Then again, other people with chronic illness can work. They can climb mountains. They can eat whatever they want. We’re all different, and that’s the point. I can do things that others can’t and others can do things that I can’t.

I just wish I could visit my friends.

What about you? Do you travel? How do you manage it? What kinds of accommodations do you use to help with your symptoms? If you have fatigue also, I’d especially love to know how you handle that!

8 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , , | Permalink
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I never wanted to be one of those paranoid people

April 26, 2016

We all know one of those people. They’re super paranoid about what they eat. Was the chicken cage-free? Was the feed free of antibiotics? What exactly is in that dish? What IMG_20160426_141926brands of ingredients were used?

I was never going to be one of those people. Ugh!

And yet, I am.

When I first went gluten-free, I avoided bread, pasta, and other obvious foods. Over time, I started eliminating more and more. Then I paid attention to non-food items, like toothpaste and floss. I was doing a lot better, but I was still sick.

I made phone calls. I checked on hand lotion and sunscreen. I washed my hands before I put anything in my mouth – even a Tic Tac!

I learned about surprising places gluten hides, like lemon juice and cooking spray and got rid of those.

Still, I was getting sick.

Then I found out about kissing. Damn it! If I kiss someone who has been eating or drinking gluten, I’ll get sick. Well, that makes dating a lot more awkward! So I’ve been careful about that, too.

Still, I was getting sick. It was a lot less often, but it still happened. What was going on?

Then I spent 6 weeks at home recovering from foot surgery. I barely left. I ate only food that I’d prepared or carefully checked. And I didn’t get sick once. Hmm…

It felt amazing to not get sick at all!!! I wanted to keep that up! But how? I started being super careful about everything. Ok, I was a bit paranoid. I didn’t eat anything unless I was absolutely positively certain that it was safe. If a friend said something was gluten-free I quizzed them carefully, and then I probably still didn’t eat it. But it was worth it. I remained ok!

Last weekend I went to a family sedar. My mother hosted and was her super wonderful, considerate self – except for the matzah and matzah ball soup, the entire meal was gluten-free. Still, when she and my aunt went into the kitchen to get the food, I asked them to wash their hands because they’d touched the matzah, which has gluten in it.

I’d become one of those people. I hate it. But you know what? It’s a hell of a lot better than being in so much pain. So I’ll keep on being one of those people. So be it.

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , | Permalink
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My calendar says I’m recovering that day

April 19, 2016

I used to call them do-nothing days. Or resting days. Or dead days. Lately I’ve been calling them Recovery Days. Because that’s what they are. I’m not doing nothing, I’m recovering!Recovery Day

Our culture says that a day of watching tv when you should be buying groceries and cleaning and going to a job and and and…. is lazy. I say that if you have a chronic illness, sometimes it’s necessary.

I had a recovery day yesterday. I could have pushed myself. I had a long list of things to do. If I’d pushed myself I might have been able to get a couple of things done. But I wouldn’t have gotten far on that list, and I would have done things badly. Then I’d have felt lousy today and I’d have barely gotten anything done at all. Sound familiar?

I used to push myself. At the time it seemed like a good idea. Now I know that pushing myself too much just means I’ll eventually hit the wall and I won’t be able to do anything at all.

So instead I took a Recovery Day. I didn’t leave the apartment. I read. I watched tv. I heated up leftovers for meals. That was it.

And today I felt better! I was able to go out and run errands. I’m sitting in a chair and writing this now (not an easy thing!) For me, that’s a super productive day.

Sometimes my Recovery Days are predictable. I can look at my calendar right now and tell you that I’ll be taking a Recovery Day on Sunday, so that’s blocked out on my calendar. I knew I’d probably be taking one yesterday, too, but I wasn’t completely sure until around 10am. I could just feel it, and there was no doubt it’s what I needed.

I used to take Recovery Days 3-5 days per week. If I left the house for an hour, the next day would be a Recovery Day. These days I’m feeling better and I only need them 1-2 times per week – yay! Of course, even now I have bad weeks, too. Sometimes a Recovery Day means spending all day in pajamas and doing nothing but watching tv. Sometimes it’s multiple days of that. Yesterday I felt better and was able to read a novel for a while. All that really matters, though, is that I gave my body the rest that it needed, in the form that it needed.

I know I’m lucky. I don’t have children or anyone else to take care of. I’m not working (though that’s not exactly a good thing.) So I’m able to spend an entire day indoors. I’m able to rest when I need to. But there are other things I should do on my Recovery Days that I can’t. I accommodate myself the best that I can. That’s all any of us can do.

You might have noticed that I’ve been capitalizing Recovery Day. That’s because it’s IMPORTANT! I think we don’t give ourselves enough credit for how hard these days are. We let culture pressure us into thinking we’re not doing enough when in reality we’re doing so much. Sometimes, it’s all we can do to get through these days. I’d rather go to the gym for 4 hours than need some of these Recovery Days. But I don’t have a choice, and I accept that (but it took me many years to finally accept it.)

How do you feel about your Recovery Days? Are you willing to rest when your body needs it? What do you do? How do you handle it? Please let me know in the comments so we can learn from each other!

15 Comments | Decisions, Expectations, Fatigue, Isolation, Limitations, Pain, Raves, Symptoms, Unpredictable | Tagged: , , | Permalink
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