A true friend understands

June 17, 2013

As I’ve said many times before, my sister and I don’t get along. Yesterday was another good example of why I don’t like to be around her.

My mother made a big dinner for Father’s Day. After dinner, I was sitting in the kitchen talking to my mom while she put food away. My sister was washing dishes, and suddenly asked me to help dry. Now, while we’d been sitting around earlier, I had made several long trips to the bathroom. I was pale. My mother commented later about how bad I looked. My eyes were puffy and half closed. While the rest of the family had talked animatedly in the living room before dinner, I had been laying there half asleep, barely saying a word. So it was pretty obvious I wasn’t feeling well. And yet she was asking me to dry dishes. I didn’t want to start a fight, so I just stood up and dried a couple of dishes. I did it slowly, careful not to drop anything, careful not to fall when I turned to put each one down. And after a few, so there just a little space in the dish rack, we all went into the dining room for dessert. I figured it was good enough. It was more than I should have done.

After dessert I didn’t even bother going to the kitchen. My dad and I sat at the table chatting – I figured he shouldn’t be abandoned while my brother-in-law was taking their dog outside for a potty break. My mother and sister were cleaning up in the kitchen. I heard my mother thank my sister for her help as my sister walked into the dining room, where I sat with my dad. My sister responded, “Well I couldn’t let you do it all by yourself.” Then she turned and looked right at me. I would have given her the finger, but again, I didn’t want to start a fight in front of my parents.

Now let’s compare that to the day before. A friend was visiting from out of town. I wanted to see her and her three kids, but I didn’t feel up to going to her parents’ house where she was staying, 1/2 hour away from me. So she agreed to make the drive up to my neighborhood. There’s a great playground within walking distance of my place but I didn’t feel up to walking, so she drove to pick me up. She understood that I couldn’t help much with the kids, and didn’t mind that I sat on a bench in the shade while she chased them. She was just happy for our time together. She even gave me a birthday gift. I pointed out that I didn’t expect anything – after all, I hadn’t given her anything this year. I can’t afford it thanks to the insurance bullshit. She said that even though I couldn’t afford to give gifts, it was still my birthday and she wanted to give me something. And you know what she gave me? A big gift bag full of gluten-free goodies! She gave me several kinds of pasta, flour, cake mix, pancake mix, pretzels, and cookies – all gluten-free! She knows how hard it is for me to find some of these things, and she gave me exactly what she knew I’d want and enjoy. And as she gave it to me, she offered to exchange anything I couldn’t eat, since she wasn’t sure exactly what my other food restrictions were. Talk about someone who understands!

Sure, my sister can be a bitch. Sure, she didn’t wish me a happy birthday. But I’m choosing instead to focus on the excellent people in my life who are wonderful, understanding, and supportive. Most of us have lost people due to our illnesses, but some of us have been lucky enough to find true friends will always be there for us.

As a side note, I want to remind myself and you that we contribute to these friendships too. Maybe I can’t babysit for my friends or cook for them when they’re ill. They offer to get me groceries and pick up prescriptions. But I lend an ear and am very supportive. I have helped them prepare for job interviews, research insurance for a kid’s illness, and just listened to them complain about jobs and families. Our illnesses don’t prevent us from being good friends. Some people don’t get that, so it’s up to us to focus on the ones who do.


My awesome truthfulness is paying off: an update

June 14, 2013

On February 14, 2012 I wrote this post about some of the little ways that I try to edit what I tell people about my health. I started out just wanting to write about the frustrations of coming up with different half-truths, but by the end of the post, I’d realized how much energy I was wasting on hiding something really major about my life. And I had no good reason for why I was doing it. At the end of the post, I vowed to stop. And I did.

Now, more than a year later, I’ve mostly adjusted, though in some ways I’m still getting used to this. Sometimes when someone asks me to make plans, I start to come up with an “excuse” instead of the truth. Most of the time, though, I just tell it like it is without hesitation. I give the real reasons why I can’t attend an event. I tell people upfront that I may not make it to their party – and why. I tell stories with socially-inappropriate (in other words: honest) details about health issues. I mention my health issues to mere acquaintances. And I couldn’t be happier about it.

Don’t get me wrong. It isn’t always easy. Sometimes it’s embarrassing (though I actually don’t embarrass easily, so it’s not as embarrassing for me as it might be for others.) Sometimes the person I’m speaking with gives me an odd look, like they think I’m crazy or they’re scared of me. The thing is, if they have an issue with me, then I’m perfectly happy not talking to them. And I think it’s better to find that out sooner rather than later. Plus, I have no reason to be embarrassed: this is my life, my reality. Why should I hide it? And really, watching you change your kid’s diaper is a lot more gross than hearing about the time I had to collect spit in a vial for a test. I think a lot of my talk makes people uncomfortable because they don’t know how to relate. It also worries them that this could happen to them. But that’s their problem, not mine.

So yeah, some of my awesome truthfulness isn’t well-accepted by others. I’m ok with that, because it’s fantastic for me! It’s so freeing to be honest about all of this! I don’t have to worry anymore about how to explain something, what to say, excuses to make, remembering what I told someone (because everyone hears the same truth,) or any other bullshit. It’s all out there, open and honest, in public.

I should mention that there are still boundaries. I’m not posting about my bowel movements on Facebook. I’m not tweeting every single detail of my health issues. I don’t go out of my way to talk about this crap every day. It’s just that when it comes up naturally, when it’s relevant, I don’t hide it. I don’t hide it at all.

It’s so freeing!

Is this the right move for you? I have no idea. Only you know your friends, family, acquaintances, co-workers, and social situation. Only you know your own comfort level. Maybe you should do it and maybe you shouldn’t. That’s a choice for you to make. All I know is that it’s right for me.

There’s a party tonight. I told the host I’ll be there if I feel up to it. Every time a friend asks if I’m going, I say that I plan to go if I feel up to it. And you know what? I’ve never felt less pressure about attending a party! This is awesome! So thank you to all of you who are reading this. And an extra thank you to all of you who write comments and tweet me. You have helped me to be more forthright online, and that has led to me being more forthright in person. Thank you for your support! I’m still sick, but I’m a lot happier.


Those three magic words: “I believe you”

June 12, 2013

I saw a new doctor today and now I’m beyond exhausted. Sitting up is unpleasant. I feel like my whole body is screaming at me to go rest on the couch with the tv and some popcorn. And who am I to deny my body what it wants? So this will be short.

The doctor I saw specializes in hard cases. He also sees a lot of patients with fatigue. Still, I was doubtful, and I think he could tell. He asked a lot of question – the most thorough questioning I’ve ever received (and I’ve received quite a bit!) At one point he asked if I ever get pins & needles anyplace. I said yes, and told him where. Then he asked if any of my doctors had ever addressed it. I was shocked to realized I hadn’t discussed it with them. Well, I had told one, but he said it was nothing. This guy disagreed. I tried to explain that I always filter what I tell doctors, trying to focus on the biggest issues, so they don’t think I’m a hypochondriac or something. He immediately understood, and said that he knows it’s common for patients to be ignored if they mention too many symptoms. It was amazing! He got it!

But there was one thing that wowed me more than any other. More than once, he uttered those three little words that every patient with a hard (or impossible) to diagnosis illness wants to hear: “I believe you.” I can’t tell you how amazing that felt. Here was a doctor who had read a 2-inch thick pile of my medical records, listened to my story once, and believed me! I don’t think this has ever happened to me before! Sure, I’ve had doctors believe me, but usually I don’t know that they believe me until after several visits, or maybe months or years of treatment. I know that my parents believe me. So do some friends. Other so-called friends (now ex-friends) did not believe me. Employers did not believe me. Strangers did not believe me. And yes, doctors and other medical professionals did not believe me.

I don’t know if he saw my tears. I didn’t want to call attention to them, but I didn’t want him to think I was upset. I was just so relieved! He believed me. He believed me. THE DOCTOR BELIEVED ME!

Since this is a short post, here’s a related bonus. I am so sick and tired of trying to convince people that my illness and disability are real. I am also tired of trying to convince them that ableism is real. Same with sexism and biphobia. So while this article is about sexism, I think it can be equally applied to all of the other -isms. I’m looking for justice and equality. I am happy to educate the uneducated. I will not tolerate the hateful.


Seeing the good in others

May 23, 2013

A while back a friend had to have a planned surgery with a long recovery time. He told friends about it in advance, letting them know that he’d appreciate food, help with errands, and just being kept company during his recovery. He set up a calendar online where people could sign up for time slots to visit him. Everyone stepped up and he was well cared for, without his partner being completely overwhelmed with taking care of him while still working her full time job and managing the house.

When you have a chronic illness, it doesn’t work that way. The needs aren’t short-term and they’re often not as predictable. I never know a month in advance which days I’ll need help preparing dinner, going grocery shopping, or picking up prescriptions. I don’t know in advance which days I’ll be stuck at home and lonely and wanting company. And even if I did know these things, it’s hard to ask for help month after month, year after year, decade after decade. I don’t want to burden anyone.

That’s why I think that one of the few benefits of a chronic illness is that you see how amazing other people can be. I’ve had friends pick up groceries for me, bring me cleaning supplies, and get my prescriptions when I wasn’t able to get to the pharmacy. Every spring people put in my air conditioners and every fall they remove them. Friends change their plans so they can keep me company at my place. The amount of support has been incredible.

We’ve had some humidity this past week and it’s been pretty unpleasant. A friend had said he’d put in my air conditioners for the season, but he doesn’t live very close and won’t be by for a another week or two. I could wait, but already I’m sleeping badly and I’m having trouble breathing today. Those aren’t good, and they definitely won’t help my poor adrenal system to recover. What to do? I put out a call on Facebook and I was stunned at the response. I had figured it was just a more passive way of asking the usual folks for help. Instead, I got offers from people who I haven’t seen in years! I got offers from people who are more acquaintances than friends! They just want to help. How amazing!

So suddenly I had this long list of people who could help me. I had one scheduled for Sunday. Others said they’d help next week if my Sunday person fell through. There was still the original offer. And then today a friend called to say he’d come by to drop off something he’d borrowed. I’d thought about asking for help with my air conditioners but I didn’t want to impose since he’s already helping me out with something else. So imagine how floored I was when he asked if the a/c’s had been put in yet and if I needed any help!

I see a lot of bad stuff in the world. Sometimes I’m treated quite badly because of my health conditions. But sometimes I see how good and generous people truly are. I’m thankful that I get a glimpse of that from time to time. I sure don’t take it for granted!

I turned on that lovely a/c today and basked in the cool, clear air. It felt amazing. And I bet I’ll sleep well tonight.