Debating the line between private and public

April 27, 2019

Today I spent a while editing something I wrote that will be published in a book. Unlike this blog, though, it will be published under my real name. I have gotten so used to writing under Ms. Rants, that I’m feeling a bit confused about this.

In the past seven and a half years I have published 736 posts on this site – yikes! Before I looked it up just now, I guessed it was around 600. That’s a lot of writing, and a lot of posts, during which time I have gotten comfortable sharing a lot. I have spoken about strained relationships, deep fears, and incredibly embarrassing moments. Yes, I know that nothing online is ever completely anonymous, but it’s unlikely that someone will care enough to dig into this tiny little site that doesn’t even make any money to try and find the author, never mind actually make that information public. And if they did, what are the odds anyone would care? This book, on the other hand will be much more widely read, we think. My name will be out there and searchable. And that makes me question, what do I want to share?

This is a question we all make every day in a thousand tiny ways. Today I had to bring my car to the dealer for recall-related repair. What a pain in the butt. They said that at least I would get a voucher for free food from their cafe. This surprised me, and without thinking I said thanks, but that I couldn’t eat anything there because I have Celiac Disease. I didn’t have to say that. I could have said thank you and just left it at that. But I try to bring up Celiac Disease frequently as a way of educating people, and now it’s habit. I want people to hear about it in benign situations, where they don’t feel like “the whole gluten-free thing is blown out of proportion.” That way when they do hear someone requesting gluten-free food, maybe instead of judging that person as being “difficult” they will remember that Celiac is a real problem for real people and instead they might just have some compassion. No, I don’t expect to change minds with throw-away comments, but I figure if they hear it from multiple people, it could have an impact.

I often get asked why I wear knee braces, why I’m limping, or something else that is none of their business. How I answer depends on the person, the way they asked, and my mood. If I don’t feel well, they won’t get a nice answer. If I feel good and have time, and they seem nice and open, maybe I will explain a bit.

But these are all relatively anonymous. The car repair guy knew my name, but that’s just one person, to whom I told one small fact. Now I am considering telling a lot more of my story – my journey through symptoms, diagnosis, shitty doctors, supportive doctors, horrible insurance problems, and all the rest – and telling it to many more people. I don’t mention family or friends in the story, it’s just about me, so it is all my decision.

I always lean towards sharing more. I think we, all of us with chronic illness, will help each other the most by being honest. That is why I made this blog anonymous in the first place. By far the most popular posts on this blog are the ones I thought no one else would care about, and I worried about publishing them because they felt super private, but I did it. Every single time, the response was huge, with people thanking me for sharing because they could relate. So I want to be open and share.

But I am also aware of the world we live in. This is the world where I could get harassed for being on government benefits, put down for eating gluten-free, and generally maligned for being ill.

One day, a friend at my chronic pain support group came up to me and told me she liked my blog. I was confused. It turns out, she had read this site and recognized that it was me. I felt exposed. But this would be different. I would go into it openly, knowingly.

I will share a lot in my story. I will be open about many things. But as I read those words again this morning, I had to ask myself, just how open do I want to be? Because once it’s out there, in a book, there’s no taking it back. And while I want to use my situation to help others, there’s a line. I just wish I knew where it was.

Have any of you had to deal with this decision of how much to make public on a larger scale? How do you decide? Please comment below, because I’d love to know! And if you’ve had to deal with this decision (and I’m sure you have, because we all have!) I would love to hear about that too. How do you decide?


Reunion surprises

November 27, 2017

As so many people do this time of year, I recently went to my high school reunion. It was WEIRD! Of course, it was weird in the obvious ways (That person knows who I am? How could that person have forgotten me? Wow, she looks OLD! I don’t even remember him.) And then there were some chronic illness-related surprises. I thought I’d share a couple of them with you today.

First, there was my own perspective, which surprised the hell out of me. For the reunion 10 years ago, life was pretty good, if you didn’t count my complete inability to get into a healthy romantic relationship. But the rest was good. I was able to go to the reunion and talk about my good life.

Five years ago I was miserable. If you scroll through the archives for this blog, you’ll see that I was NOT doing well health-wise. That had a bit emotional impact, too. I was fighting to get disability benefits. I didn’t want them, but I needed them. Unfortunately, I was deemed “too healthy” for them. Fuck that shit. I felt horrible. I was house-bound multiple days every week. I didn’t think I had the energy for a reunion, and even if I did, what would I say? I wasn’t dating anyone, I wasn’t working, and the future felt bleak. Blah. I stayed home.

This year was different all around. First, I’m feeling well enough to attend a reunion! Ok, maybe not every day, but I rested up in advance and I managed it. I’m doing some very part time work, and when someone asked what I was doing for work, I mentioned that. There was no need to say it was part time. I talked about it like it was a full time job, because why waste time on details. This many years out of school, most of my classmates are married and have kids. I was one of the only ones who was unmarried. But I was ok with that. I mentioned to someone that I was writing a book, and when he asked about the topic, I said it was about chronic illness. I didn’t bring up my health stuff otherwise, and I didn’t dwell on it, but I also didn’t hide it.

I caught up with people and had a nice time. Because you see, I went into this reunion not trying to impress anyone. I didn’t care what they thought of me. Sure, there were a few people I wanted to reconnect with, but most I didn’t even bother to talk to because I didn’t care to find out what they’d been up to. If they asked me, then I answered, but I never worried about them judging me. For one thing, I figured most of them would be more worried about others judging them than about passing judgment. But also, what do I care what a bunch of people from high school think about me now?

My own attitude was perfect. It was freeing. And it shocked the hell out of me.

But there was another surprise. Over the years, I have become Facebook friends with a lot of former classmates. Facebook is weird. We’re not friends now, we weren’t friends then, but we’re connected and seeing things about each others’ lives. Go figure.

I write about a lot of stuff on Facebook: politics, cute dogs, crochet, my small business, and of course, chronic illness. Sometimes I share funny memes. Sometimes I share poignant blog posts. Other times it’s news articles. And occasionally, I write personal essays.

So I’m at the reunion, and this guy I wasn’t really friends with in high school, though we did share a few classes, came up to me. We’re Facebook friends now, but haven’t spoken to each other since the last reunion I attended, 10 years ago. He came up to me, looked me in the eye, and said he liked my writing about chronic pain. It got to him. Then he told me about a friend who was recently diagnosed with MS.

Of all the things I expected to happen at the reunion, that wasn’t one of them. This guy I didn’t really know told me that my writing about chronic pain had an impact on him. I was touched. And very surprised.

You see, we don’t know who will be impacted when we speak honestly about our situations. There’s a lot I don’t share on Facebook – they don’t need to know that I’m on food stamps or SSDI. They don’t need to know my embarrassing stories. But what I do share, I share honestly and from the heart.

This reunion was nothing like what I would have expected. It was fun and loud and interesting. And most surprising of all, my chronic illnesses were present, but not over-powering. That’s something that I hope to continue.


Health insurance should cover a bidet for anyone with a GI illness

September 21, 2014

Sometimes things get messy… down there. It happens. And when you have diarrhea on a regular basis, including explosive diarrhea, maybe it happens a bit more than healthy folks might expect.

As recent readers know, the last few weeks have been especially difficult for me. Still, I’ve been pushing through. I was doing ok, but the last few days have been incredibly rough.

And so I wasn’t feeling great this morning as I read my Facebook feed and slowly ate my breakfast. The stress was getting to me. I’d barely the last 3 nights. I was pretty sure I was all cried out…. at least until the funeral tomorrow. Who knows what that would bring. And how would I make it through the day? The funeral, sitting shiva, the long drives…. would I make it? I tried not to worry about getting over to be with the family again today, figuring I could rest all morning and afternoon and head over much later. I wouldn’t even get dressed, just stay in my pajamas until 3pm. I tried not to think about it. I tried not to think about how my grandfather looked when I visited him on his deathbed less than 48 hours ago. I tried not to think about the hell that my mother and her siblings were going through. I tried to remember the good times. And there were so many good times. I am endlessly thankful for that.

I sat there feeling pretty good emotionally, all things considered. I was hanging in there physically. I was doing ok. I was going to make it. And then instead of feeling gas released by a fart, I felt poop. Yes, I was pooping my pants. This has happened a couple of times before, but with all of my recent improvements GI-wise, I thought it wouldn’t happen again. But it did.

I bolted from the chair and ran for the bathroom. I took just a couple steps and realized the room was fuzzy. One part of my brain knew the problem, and of its own accord my hand reached up, pulled off my reading glasses, and threw them down. I never broke stride. I made it to the bathroom. Most of it ended up in the toilet. It was just liquid. I felt weaker than before, but I managed to wash out my favorite underwear (how unfortunate!) and my favorite fleece pants (just as unfortunate!) but my ass still wasn’t entirely clean. Things had gotten messy, and thanks to my joint problems in my hands, wrists, and shoulders, it was hard to clean up. Worse than what I usually have trouble cleaning up. So I got in the shower.

I stood in that shower for a long, long time. I hadn’t wanted to shower so early, or maybe even at all today. Showering takes so much energy, and that wasn’t energy that I had to spare. But what were my options? So I stood in that shower and thought, not for the first time, about how much I wish I had a bidet. I used one once when I was in Europe and I liked it. I’m pretty sure if I had one now, I’d be using it often. There are so many days when it would help, but few as bad as today.

We don’t talk about this kind of thing often. But a few weeks ago I was talking to a friend who also has GI problems and we talked about those uncertain farts, and how we can never be sure if they’ll really be farts, or if we’ll end up pooping our pants. I was relieved to hear I wasn’t the only one dealing with that, but sad for her that she has the same problem. And why shouldn’t we discuss it? Yesterday, after hearing about my grandfather’s death, I stood in the shower and cried – sobbed, actually – for ages. I felt my nose start to bleed, but I only stopped crying when I felt myself choking on the blood. By the time I got out of the shower I’d forgotten about my bloody nose until I brushed my teeth. I looked in the mirror and saw the blood dripping down. And I feel like I can talk about that, so why not talk about gastrointestinal problems?

So I’m throwing it out there right now, so all of my fellow CI-ers can remember that if you have similar problems, or maybe something entirely different that you find embarrassing, you’re not alone. We all have our stories. We might not talk about them publicly, but we have them.

And if you’re looking for a safe space to share your own otherwise-embarrassing stories, just post them here in the comments. I won’t judge. (And you can use an anonymous name if you want.) Remember, you’re among friends. And at least a few of them have pooped their pants.


A day to celebrate! DOMA is dead!

June 26, 2013

Obviously I was upset yesterday. And sure, I should probably write about the pain flare I had last night while I was sleeping. But I just can’t. Today is too great a day to dwell on anything bad!

For those who don’t know. The U.S. Supreme Court ruled today that DOMA is unconstitutional, and it also ruled that Prop 8 had no standing. In English, the Defense of Marriage Act is dead, which means the federal government will now recognize same-sex marriages performed in the states where they are legal. The Proposition 8 ruling means that same-sex marriage is now legal in CA.

When I was younger, I just assumed that if I grew up and fell in love with a man then I’d get married, and if I fell in love with a woman we’d live together. That was it. Then in 2004, same-sex marriages started taking place in my home state of Massachusetts and everything changed. Suddenly, I could marry a woman! For some people this had an immediate affect. Since I was single, I wasn’t about to get married, but it still changed my attitude and also others’ perceptions of me. After all, if we’re equal enough to get married, maybe we’re just plain equal.

Even with more and more states recognizing same-sex marriages, the federal government did not. This affected taxes, inheritances, hospital visitation rights, health insurance, immigration, and so many other issues. I felt the inequality myself. I saw it affecting my married friends.

Today that changed. After days, months, years of waiting, we finally had the answer: the Supreme Court ruled that the federal government must recognize all marriages equally, just like it had before DOMA was created. I felt the initial excitement: WE WON! And then it started to sink in. I started to feel it. We won equality. We won rights. We were going to be treated the same as everyone else. I watched my Facebook and Twitter feeds fill up with the excitement. I saw the occasional detractor and dismissed them entirely. They’re falling behind the times. I have no doubt that one day soon, same-sex marriage will be legal throughout the country. The dominoes are falling. The objectors are realizing they have no valid points. The general public is realizing that if they’re straight, this really doesn’t affect them directly at all. And soon this will just be another embarrassing part of history.

I usually make an effort to write only about chronic illness-related issues but, well, this is my blog so I can write whatever the hell I want, right? And today I really can’t write about anything else. It’s too great a day.


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