When friends have chronic illnesses too

August 8, 2017

The first couple of years in my chronic pain support group, I got a lot of knowledge and support from the group. But now, what I get out of the group more than anything else is friends who understand.

It started slowly, with a couple of conversations after the group ended. Eventually, two of us decided to get together. Then we kept hanging out. That emboldened me, so I invited another potential friend to hang out. Then another. I haven’t stayed friends with all of them, but the ones I have kept in touch with are now valued friendships.

It’s not all rosy. Having friends with chronic illnesses can present its own challenges. We cancel on each other constantly. I invited a group over to my place. 6 were going to come. 2 showed up. Everyone else didn’t feel up to it at the last minute.

And speaking of logistics, it’s so great to have people to hang out with on a weekday! Being home so much can be isolating. Not working is lonely and makes me feel unproductive. Having a place to go and someone to see, even just once or twice a month, makes a huge difference.

Now on the flip side, when I’ve been the one to not show up because I don’t feel well, I know they understand. I don’t have to explain, make excuses, or apologize. It’s totally fine. And that’s awesome.

Of course, we don’t always understand. No two illnesses are the same, even when you have the same diagnosis. We share what helps us and what doesn’t, which is great. But sometimes there’s a bit of envy, frustration, and defensiveness, too. Why is she complaining about having trouble walking when I can’t walk at all today? Should I tell her about my pain when I know hers is even worse? I wish I could work/travel/have kids/have dogs/go to festivals/whatever like she does. I have had all of these thoughts and feelings and more. I try to go with it. It’s natural and ok to feel it sometimes. I just make sure it’s not all the time.

One friend I especially like is someone I think I would have been friends with if we were both healthy, too. When we hang out, sometimes we discuss our health problems. More often we’re busy with the other things in our lives – talking about my dating status, tossing a ball for her adorable dog, playing board games, comparing our latest crochet projects. Just stuff. Because we have interests in our lives besides our health, and that’s important. And yes, we talk about health stuff too. We give each other tips for handling certain symptoms. We provide an ear when the other person just needs to talk. We bounce idea off each other.

These friendships mean the world to me.

Not all friendships are in person. I have been amazed at the friendships I have cultivated online, too. It can be hard with this blog, since it’s anonymous, but I am also online in the chronic illness community as me. Through this blog, I have had some great email exchanges with folks. Through my own profile I have met amazing people both online and in person.

If you don’t have friends or community with chronic illness, and you feel lonely or misunderstood, give it a shot! Just remember, chronic illnesses shouldn’t be the only aspect of your friendship. Do other things, talk about other things, focus on other things. From time to time it’s nice to have someone to complain to about all of this health shit, but that won’t be the basis of a solid friendship.

Do you have friends with chronic illnesses? If so, how does that affect your friendships? Please share in the comments!

2 Comments | Expectations, Isolation, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Permalink
Posted by chronicrants

I need help but I’m not helpless

February 13, 2017

Maybe it’s because I have a disability. Maybe it’s because I ask for help. Maybe it’s because I’m a woman. Maybe it’s all 3. Whatever the reason, it’s irritating.

It’s winter in Boston. Winter in Boston means snow on the ground. Not every day, but enough of the time.

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It’s beautiful. It’s picturesque. And it’s a pain in the ass.

I love the snow when I’m indoors, but then I need to go out. It’s slippery, and I’m terrified of falling and further hurting myself. I’m not steady on my feet, so a fall is more likely. I need help shoveling out my car due to my back and wrist pain. Suffice to say, it’s difficult.

Luckily, friends and strangers have been kind over the years, and in my new home, that hasn’t changed. Folks have helped me shovel out my car, and for that I’m grateful.

What I could do without is the “explaining.” Today a neighbor helped to shovel out my car while I cleared the top, which thankfully I’m still able to do. It was really sweet – we’d never even met before. I was really appreciating his efforts. Then he told me to “try moving back a bit, don’t gun it, if you get stuck you’ll want to…” and he proceeded to tell me how to back out of the parking space. I’d already told him I’d grown up here and lived most of my life here while we chatted about Boston winters. So why did he think I couldn’t back out of a parking space in the snow (if you’ve never done it, yes, it’s tricky. But once you’ve done it for 20+ years, you usually know what you’re doing.)

The other day it was someone else telling me how to back out of a space. A couple weeks ago, someone warned me as I got in my car that the roads would be getting slippery soon. What the $%#@?!? I learned to drive in this stuff back in the ’90s! I know how to tell when roads are getting slippery, for crying out loud.

I need help. That’s true. I won’t deny it for a second. But I’m not entirely helpless. There’s a lot I can do and there’s a lot that I know. Driving in the snow is one of those things. So I wish people would stop condescending to me.

4 Comments | Educating, Frustration, Insensitive, Limitations, Pain, Rants, Support, Thoughtfulness | Permalink
Posted by chronicrants

Answering “What’s new with you?”

November 29, 2015

What’s new? It’s a simple, standard question. We all ask it and have it asked of us dozens or hundreds of times each year. Sometimes it’s like saying “Hello” and the asker doesn’t expect an answer. But sometimes they do. And sometimes, the answer is complicated.

I’m not talking about health stuff here. Well I am, but not directly.

When someone asks “What’s new?” sometimes what’s new is bodily issues. That’s probably true of anyone with a chronic illness. But sometimes it’s health-related stuff. When someone asks “What’s new?” should I tell them about my uncertainty about Section 8, fights with health insurers, problems with doctors, and about how I’m running out of room to store medical supplies at home? Should I explain my concerns around earned income and Social Security or the way that Medicare and Medicaid work together to cover costs but sometimes they fail, even when it means having to give a 20 minute explanation of the entire system just so it makes sense?

It’s like back in the days when I used to work. If someone asked me how work was going, I’d say it was good or bad, or maybe tell a funny story, but I wouldn’t talk about the boring issues with vendors or the technical aspects. I wouldn’t use terminology that I first had to define.

And that’s how it is with a chronic illness. Even when I’m not talking about my actual health, it’s hard to answer the question because so much of what’s happening in my life is health-related in one way or another.

So now I’m asking you: How do you answer the question, “What’s new with you?” Please let me know in the comments!

12 Comments | Educating, Expectations, Frustration, Isolation, Rants, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , | Permalink
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Adjusting to my new-found support

November 13, 2015

We all know how it goes. You get sick and everyone steps up to help you. Then you stay sick, and people get busy with their own lives. It happens. I’m as guilty of it as anyone. And that’s why it feels so odd when the support is offered again.

Part of the problem, of course, is that I suck at asking for help. I should do it more. And part of the problem is that I would 2015-10-17 11.45.26be asking for help so often, my friends would get burned out. I get that. I can’t expect anyone to be visiting me every other week or helping with laundry regularly. But at the same time, I know that people forget, and that’s tough.

So when I had surgery a couple weeks ago, it was wonderful that so many friends stepped in to help and offer support. Suddenly there was an outpouring of good wishes, emails, and phone calls. I’ve gotten visits and thoughtful gifts (like a gift card for grocery delivery!) After so many years of poor health, this all feels a bit strange, but it’s far from the strangest part.

The strangest part is every time someone looks at my foot and comments on the cast. I don’t know how to respond when someone asks if I’m in pain or if I’m having a tough time. I won’t lie to you – this isn’t easy. But it’s not that bad, either. I’m stuck at home, but the truth is that I’m often stuck at home, this is just for a bit longer. It hurts, but very little compared to my normal daily pain, and a hell of a lot less than the original injury. I’m limited, but not so much worse than usual. I’m frustrated, but that’s nothing new. It stops me from doing things what want to do, but that’s like all other days. Yet people ask about it as if it’s so different.

The truth is, I feel better this week than I have in ages, thanks to the change in seasons and my forced increase in rest time.

In another month I’ll be back to “normal” and the extra emails, calls, and visits will have ended. For now, I’ll just enjoy it while it lasts.

3 Comments | Expectations, Isolation, Kindness, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Tagged: , , | Permalink
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