Why I think more folks with chronic illness should blog

July 26, 2020

Several days ago this blog had an anniversary: 9 years! It’s hard to believe that I have been writing about chronic illness issues for 9 years and people have been reading it. In those 9 years I have written 769 posts. WOW! And in those 9 years I have learned a lot about the benefits of blogging about chronic illnesses.

I have learned that this is an excellent outlet. On this site I have written about my fears and learned that I was not the only one with those fears. I have written about my pain, fatigue, and other symptoms and have learned that I was not the only one dealing with those symptoms. I have written about medical trauma, embarrassment, harassment, and more. Again, I learned that others experienced those same things. I have also written about supportive friends, caring family, great doctors, and others, and found joy in others’ stories of similar experiences. This has not only helped with the loneliness and isolation that I, like so many others with chronic illness, experience, but it was also extremely validating.

I didn’t know many people with chronic illnesses when I started this blog. Slowly, I got to know my regular commenters. I now get excited when I see a comment from Lorna, Cordelia’s Mom, Tamara, Karen J, and others who I feel I have come to know in some small way. Making connections is hard, especially for those in a community where so many are not able to connect due to the very issue that makes them search out connection in the first place. Blogging gave me a way to reach out to people around the world and have people reach back, all without leaving our homes.

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So often we are left on our own to figure things out. Doctors aren’t helpful, or the help we need is outside their area of expertise. I have written about so many things that I struggled with and I received a lot of good advice from folks who have actual lived experience. You gave me tips on transporting a wheelchair, getting a bidet to help with my sore butt after too much wiping (thankfully that’s no longer an issue now that my food problems have been sorted out!), dealing with inconsiderate strangers, and more. Blogging has brought me so much useful information. Thank you for that!

Most surprising to me were the therapeutic benefits of blogging. Living with chronic illness is hard. I was able to vent when I needed to vent, without judgment or burdening a friend. I said things that I probably wouldn’t have told another person. I was used to hiding so much, and suddenly I had an outlet. It was like a public diary at times. Making this blog anonymous gave me a freedom that I had never experienced and I was able to open up. At first I just opened up a little, but to my shock, those most difficult, most private posts were the ones that people most appreciated. I got so many comments from folks saying that they wished more people would discuss those topics. That encouraged me to write about them a bit more. And then more.

This blog gave me the chance to practice that openness. As I became more comfortable writing about my symptoms, fears, and diagnoses on this anonymous blog, I began to slowly talk about those things in person also. Bit by bit it became easier, and now I am a fairly outspoken advocate. I highly doubt that would have happened without this blog.

Blogging isn’t for everyone. I have more recently done some work under my real name. Under my real name I write, speak on podcasts, and have even done a few videos. They are all so different, and I can see why each is both loved and hated by various people. I’m a talker, and I prefer talking in general, but when it comes to my chronic illnesses, I definitely prefer writing. That just works for me. I also prefer reading blogs instead of listening to podcasts or watching videos. But each has its benefits.

Maybe something else works for you. Despite the title of this post, I don’t think that blogging is necessarily best for everyone. But I do think that many folks with chronic illnesses can benefit by having some sort of blog, social media channel, YouTube vlog, or other way of sharing.

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And beyond each person’s individual benefit, I believe that the community as a whole benefits when we write and talk about our chronic illnesses. Our community is marginalized. We feel isolated. Too many people pretend that chronic illness doesn’t exist or isn’t important. Government programs do not support us, laws do not protect us. We face discrimination and worse. Communicating with each other and with the world will help. It will help the individuals who are also feeling marginalized and it will help society in general.

So if you have ever considered starting a blog, a podcast, a YouTube channel, or anything else, why not start today? You can start for free with very little time commitment. If you’re not sure where to begin, please reach out to me (msrants@gmail.com) and I’ll be glad to help you!

Thank you for 9 wonderful years. I look forward to continuing to write and communicate with you!


Advice between chronic illness folks

October 16, 2019

I don’t know about you, but it took me a looooong time to figure out how to handle flares. The truth is, I’m still learning. But over time, thankfully, I have found some things that help. Sometimes I take the learning process for granted; after all, I have had symptoms for almost 30 years now. A phone call a few nights ago changed that.

A friend was in the middle of a flare, and having a rough time. They were dealing with both the horrible physical symptoms as well as the emotional fallout of having to miss a much-anticipated event that night. There was also the all-too-common self-recrimination, wondering what they did to cause this. Maybe they should have done less the previous week when they felt so good. Maybe they should have rested more. Maybe maybe maybe.

I’m the queen of “what ifs” so I really get that. I do that to myself all the time, as much as I try not to. I’m getting better, but it’s still a struggle. This time, though, it was someone else who was struggling, so I was able to step outside of my own issues and help them.

My friend was only diagnosed last year, which really isn’t that long ago. It takes a long time to learn how to handle chronic illness. I wish I had had someone to guide me, but unfortunately, there was no one in my life at the time with that kind of experience. Now, I am glad I can be that person for others.

First, I talked my friend out of the emotional spiral. Sometimes our bodies are going to flare, and there’s nothing we can do about it. Maybe they did overdo it, but there was no way to know in advance. And maybe they didn’t overdo it, and there’s no way to know that, either. Maybe they could have done less last week, and they still would have had the flare, right? The weather was terrible; not only are we going through a seasonal change, but it was a very stormy day. There’s a good chance the weather was at fault more than anything, and what can anyone possibly do about that? Besides, once you’re in a flare, blaming yourself won’t help at all. And as much as we think we can figure out the cause and prevent the next flare, we can’t. Ok, sometimes we can, but to think we can do that every time is just unrealistic. That would imply there’s a way to prevent ever having a flare again, and we know that isn’t true. We only wish it were.

Once my friend was feeling a bit better emotionally, we talked about how to handle the current situation. I suggested some fun tv shows to watch, etc. But here’s where we get to the part I most want to share with you. Without thinking much of it, I mentioned some things I do that my friend thought was brilliant and it got me thinking, maybe not everyone does this? So let’s share our tips!

I know I will have more bad days. I don’t want them, but they are inevitable. So I prepare for them. Just like I have bandaids at home for the inevitable future cut or scrape, and acetaminophen for the inevitable future headache or fever, I also keep things around for future flares. Here’s a short list:

  • Fun, lighthearted movies saved on my Netflix and Amazon Prime accounts, plus a few old dvds.
  • Easy to watch tv series saved on Netflix and Amazon Prime.
  • Chocolate and other comfort food.
  • Frozen leftovers of healthy meals I have previously made.
  • Low-energy hobbies on hand. For me, this is currently knitting and crochet, which I enjoy on all but my worst days. I also like to read and listen to audiobooks when I feel up to it.

These work for me, but you will have your own items. On top of this, several years back I read a tip on Chronic Babe¬†to make a list of things to do during a flare, since we can’t always remember these things when we’re dealing with tough symptoms. One problem I have found is that when I feel especially bad, I don’t even think to look at the list! So I recommended that my friend make a list, and tell several close friends and family members about it – anyone who they might talk to during a flare. That way, their friends and family can remind them to check their flare list, where they will find a list of things to do and ways to think.

My current list has fewer items like the ones above, which have become second nature at this point, and more items around my thought process, mostly recommended by my therapist. These help me to stop blaming myself or assuming things will get exponentially worse. I keep the list in the Google Keep app on my phone, so it’s always handy. Even if I don’t have the energy or am in too much pain to cross the room to my desk, I always have my phone on me. That’s key – keep your list where you can easily find it when you need it. Keeping it at the bottom of a heavy box on a high shelf is definitely not the most useful place for it!

It sucks, but we all know that we will have bad days, so we might as well prepare for them when we’re feeling ok. What do you to to prepare for the bad days? Do you have a flare list? What’s on it? Please share in the comments, because I’m certain you will have ideas that I and others haven’t thought of, and we all need to learn from each other!


Would it be different if I weren’t a woman?

August 21, 2019

I started a new medication. My doctor and I had discussed beforehand that the dose I wanted based on my research was higher than what he suggested. We agreed I would start at his level, then go up only if needed.

For the first two days I felt absolutely horrible. I increased the dose and felt less bad. I increased more and felt better. So I stayed at the higher dose for a bit. It still wasn’t having the effect I had hoped for, but I needed more time, and the higher dose meant my prescription would run out early. I messaged my doctor to get a new prescription.

My doctor said he didn’t remember discussing the higher dose and thought I should be on a lower one. We went back and forth several times in email. I was anxious: challenging doctors can be problematic. I don’t want to be considered a “difficult” patient. I want my doctor to like me so he’ll help me more. Many doctors dislike being questions. Many people dislike being questioned in general, of course, but doctors often have big egos, and are treated like they know it all.

As I talked to my therapist about my anxiety, I discovered two interesting things. First, she helped me connect my anxiety to the way some medical practitioners had treated me in the past. It all made sense when she connected the dots. In fact, it seemed obvious, but I hadn’t seen it.

Second, as I spoke, I said that this wouldn’t be a problem if I were a man. I didn’t even realize I was thinking that; it just popped out of my mouth. And the instant it did, I knew it was true. I had an imagine of the conversation I’d had with my doctor in his office when he prescribed this medication. I thought about how I presented my own research and his reaction to that. He wasn’t entirely dismissive, but he didn’t really consider it, either. And I felt that if I were a man, he would have actually listened to me and considered the merits of what I presented.

Am I right? Who knows. I can’t test this. But here’s what I do know: it is documented that women and men are treated differently by medical professionals. You can read about it here and here, among other places. Sometimes I wonder if this entire journey would be different if I were a man. I’m not saying men have it easy. They are often maligned for “giving in” to symptoms, and they are discouraged from expressing and dealing with the complicated emotions that come from living with chronic illness. Still, I wonder. Would I be taken more seriously? Would I get of the tests I request, less resistance to the treatments I want to try? Would a doctor still have refused to give me a medication in my late 20s because it would cause infertility, even though I told her I was willing to risk it?

Obviously, I have it easier in many ways, too. I am cisgender, petite, white, and well-spoken. That gets me farther in a lot of situations, including medical settings. I am bisexual, but most doctors don’t know that, just as most don’t know that I am Jewish. Still, this question about gender weighs on me.

I am curious, what experiences have you had in medical settings that you think may have been different if you presented as a different gender? I’d love to hear about them.


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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