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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The futility of “You get what you pay for” in healthcare

May 15, 2016

It started as a normal health conversation. I was talking to someone I knew who just got her license (like a prescription) for medical marijuana. She was talking about how great her doctor was, and how I should see him.

I had just started the process to get a license myself. I pointed out that I had already seen a doctor and I wasn’t about to see another. She said I should see hers when I have to renew my license (in 6 months, per state law.) I pointed out that my doctor is cheaper. And that’s when she said it.

You get what you pay for.

I was stunned. First, that’s obviously not always true. My smartphone, for example, was one of the cheaper ones out there, but it’s been running perfectly for 2.5 years. I have plenty of friends with phones that cost twice as much that haven’t lasted as long, or with shorter battery lives. More expensive is not always better.

But more than that, she knows about my financial situation. So even if she’s right, why would she suggest that I spend an extra $100-200 per year unnecessarily? How insensitive!

To be fair, I don’t think she fully understood what she was saying. She became unable to work before she ever reached the age to work. But at a young age she also moved in with the man she later married. He has a good job that easily supports them both. Funds aren’t unlimited, but they take the occasional trip overseas, have 2 dogs, live in a nice apartment, and can afford extras that help her health-wise like massage appointments and laundry service. That’s the only adult life she’d ever known.

So she doesn’t know what it’s like to know that every penny you spend is being pulled out of limited savings. She doesn’t know the fear that if you spend too much, you will run out of money, and then what?

I shook off that comment. I was too surprised to coherently answer, and I knew it wouldn’t matter anyway. Still….

You get what you pay for.

Maybe she’s right? I’ve thought about it a lot in the last two days. Maybe I should have seen that other doctor. In theory, I got what I needed: the license. But her doctor did sound helpful. He gave her personalized advice: which strains of cannabis to buy, how much to take, etc. Then again, it’s too soon to know if his advice was accurate. Maybe it was, and maybe it wasn’t. Maybe my doctor’s more generalized advice will turn out to have been more useful.

In 6 months I will need to decide if I should see the same doctor I already saw, or try hers. I’m not sure what I’ll do. What I do know is that line rubbed me the wrong way.

People are constantly offering suggestions of things that will help my health: acupuncture, massage, Alexander Technique, etc. Many of these will and have helped – but who’s offering to pay for them? No one!

So from now on, I think that will be my response. When someone says, “You get what you pay for” or “You should try X” (and of course X isn’t covered by insurance) I’m just going to say:

Are you offering to pay? Thanks! I’d love to try that!

What about you? Have you encountered comments like these? What do you say? Please comment below! I’d love to know!

5 Comments | Frustration, Insensitive, Intrusions, Limitations, Medication, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: | Permalink
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Confronting the ghosts of medical experiences past

May 10, 2016

Two weeks ago someone I know through my chronic pain support group asked if anyone could give her a ride to an appointment in a town that she can’t get to by public transportation. I volunteered. Little did I know.

It wasn’t until after I volunteered that I thought to ask where in that town her

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Where I walked after confronting today’s ghost.

 

appointment was. It turns out, it was at the same medical center that I went to for my entire childhood. It’s the place where I was treated badly over and over and over again.

My first reaction wasn’t a good one. I pictured the ride up that elevator. I remembered the waiting rooms. I flashed back on the parking garage. And I got really anxious.

And that’s while I was still sitting in my living room!

If figured I could drop her off, find someplace else to wait, and then pick her up. But I was still worried about how I’d react when the time came.

Then someone else in the group volunteered to take her. I told her that if she didn’t mind, it would help me out if she could go with the other person. I never told her why – why cloud her opinion of the place? I was incredibly relieved, but still, the entire thing brought back a lot of memories I’d managed to block out.

Today was different. When a friend called and said she was anxious about an appointment and asked me to go with her, I asked where it was before I answered. I’d learned my lesson. It wasn’t until we arrived at the office (which I’d never been to) that I saw the name on the door. Oh my!

This was the surgeon who messed up my treatment when I was 18. On top of that, he was a real prick. I never call anyone that, but he was. He was a jerk. An asshole. He told me that I shouldn’t complain about the pain I was in because the Olympic gymnasts (it was during the Olympics) were in worse pain (who would he know?!) and look what they could do.

If I was better at standing up for myself back then, I would have pointed out that they had a choice. I didn’t. And I would have pointed out that he was a real jerk for talking to a 17-year-old like that. And I would have never seen him again.

But I didn’t say any of that. Instead, I returned to him and let him perform surgery on me. What was I thinking?

And I saw him today. My friend asked me to go into the appointment with her. I put my feelings aside and acted like I didn’t know the guy. I supported my friend. I took notes. I asked questions.

And now I’m not sure how I feel. I went to a pretty wooded park and walked around for a bit after that. I pet a couple of dogs that people were walking (because any day I pet a dog is a good day!) But I didn’t think about that doctor at all.

Maybe I’ve moved past it. Maybe I dissociated from that guy. Maybe I’ll have nightmares tonight. Maybe this will catch up to me in a week. I don’t know.

All I know is that right now, at this moment, I’m feeling ok. I’m focusing on that. And I’m going to try extra hard to avoid horrible doctors and terrible buildings from past experiences, but I know that might not be possible. After all, I’ve seen a whole lot of doctors in over 20 years of living with chronic illness in Boston. I guess it was inevitable that I’d face some of these ghosts again. I just hope it’s the last time for a while….

Have you had experiences like these? How did you handle them? How do they make you feel?

2 Comments | Frustration, Healthcare, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
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