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?

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Feeling blah

August 30, 2017

This has been an odd summer for me. The thing is, I’m not sure how much of that is because of my chronic illnesses, and how much might be coming from something else.

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For one thing, the weather has been unusually not-too-horrible. I can go outside! On top of that, I seem to be less sensitive to air pressure and humidity than I have been in the last 10 years or so. More ability to go outside! That doesn’t mean I can always go out, but on days that would have caused extreme pain or trouble breathing before, I’m actually doing ok.

On top of that, for the first time since I was 18, I live in an apartment with central air conditioning. This. Is. Awesome!

Because of all of that, I have less fatigue and less pain than in previous summers.

So why do I feel so blah? Why have I been a bit moody? Sure, I still have more pain and more fatigue than at other times of the year, but is that it? I keep thinking it is. I keep thinking that when summer is over, I’ll feel better.

It’s not like me to be so uninterested in certain things. I have been trying to do some part time work, but I’ve barely done anything for my fledgling business all summer. At first that seemed ok. I had worked too hard in the spring and was burned out. So I took a break. The problem is, I still have no desire to go back to it.

The thing that really worries me, though, is that I’m wondering if maybe I shouldn’t get a dog after all. You regular readers know that I’ve been trying to get a dog for more than 2 years, with one problem after another cropping up. And now I wonder if a dog is too much work and too much responsibility for me. And I love dogs, but are they worth it?

It occurred to me that these are symptoms of depression. But I’m not depressed. I’m still very happy. I’m very interested in other things. I have been excited to try some new crochet patterns. Last week I finally picked up a project that I had let go of for over a month, and now I’m excited to work on it again. I’m loving spending time with friends.

So why the hell am I doubting if I should get a dog? Why am I avoiding work?

I think it’s the summer effect. This summer isn’t as bad for me this year, it’s true. But I think it’s affecting my mood anyway. Otherwise, this just makes no sense.

In 3 more weeks I should know.

A lot of people don’t like working. That’s ok. But not wanting to get a dog? If that keeps up, I’ll know something is truly wrong.


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