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!

4 Comments | Educating, Isolation, Raves | Permalink
Posted by chronicrants

The rules are always changing

July 20, 2020

I remember when I first made the connection between the weather and my gastrointestinal symptoms and fatigue. I was lying on my dorm room bed, nauseated and exhausted, and it suddenly hit me: this wasn’t the first time I had felt this way on a hot day. I paid attention and sure enough, a pattern formed.

Of course, the weather wasn’t my only trigger and it would more than a dozen years before I finally put together some of the pieces of my health mystery. Still, this was an excellent start.

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Over the years, as my overall health worsened, my reactions to hot and humid weather got worse, too. I began to avoid spending any more time outside in the summer than absolutely necessary. I love being outside in the cold air of the fall and winter, but sadly, most folks do not unless they are doing winter sports, which I can not do. When my friends hang out outside in the summer, I can not join them. This has been incredibly hard.

Last year I noticed some improvement. My overall health has improved a lot, and my new medication last summer probably had a bigger impact than I had realized. I didn’t think too much of it until this summer. Somehow, I could be outside without immediately feeling terrible. Fantastic! Or so I thought.

One hot day, I waited until the evening to take a walk. It was still warm and humid, but not as much, and I was feeling ok. I walked farther than I had planned. It was wonderful! Then, almost halfway through my walk, that particular feeling that I know so well hit me and I knew I would need a bathroom, and fast. I turned around and headed home as fast as I could. Thankfully the symptoms weren’t too bad (on my admittedly skewed scale.) Still, that wasn’t fun.

Another day I was sitting outside, enjoying the fact that I could simply be outside. It was around 82F and the dew point was around 60. Normally I couldn’t have been out in that weather, so this was a real treat! Until it wasn’t. Until that feeling hit me again. I got to my bathroom as fast as I could and felt horrible the rest of the day.

I knew the old rules. I knew that within moments of being in the heat and humidity I would feel bad, but if I got into air conditioning quickly enough, I could avoid feeling horrible for the rest of the day. But these new rules are confusing. My body seems fine… until it suddenly isn’t, and by then it’s too late to avoid the symptoms. How long can I be outside now? 1 minute? 5 minutes? 10 minutes? And what are the new temperature and dew point cutoffs? What does my body now deem acceptable? I still check my weather app carefully, but I no longer know what will trigger my symptoms and what won’t.

The changing rules are one of the trickier challenges of living with chronic illness. This is nothing new. The rules have changed many times over the years, and every time it’s a pain in the ass to figure out the new rules. There’s no guidebook – it’s all trial and error. I don’t like it, but I have no choice.

Going outside is more important than usual this year. Typically when I get tired of my apartment, I go to the library or I walk around a store. I find visit friends. None of that is possible this year. On the other hand, at least when I feel sick, I don’t have to worry about missing out on plans outside of the house, because there aren’t any.

I am counting down to autumn, when I won’t have to worry about the temperature any more. Until then, I will be sitting at home, trying to figure out which days I can go outside without paying for it later. And feeling very grateful for my apartment’s air conditioning.

Leave a Comment » | Expectations, Fatigue, Frustration, Gastrointestinal, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants