Today is the 6th anniversary of my first blog post. I’m still here, but the blog has not grown at all. I have a lot of complicated feelings about that.
Anyway. I originally intended this blog to be a source of scientifically-supported wellness information. I wanted to provide the information I couldn’t find on the internet about what specific medical procedures were like from the patient’s point-of-view. As I lost faith in traditional medicine, I wanted to know whether alternative therapies were scientifically tested, and whether they were worth the time and money. I still do want to know these things and to provide this information.
But, over time, I stopped thinking of myself as someone who was temporarily ill and who could be healed if I could just find the right cure. I realized that chronic illness is not the same as acute illness – often there are no cures and there may not even be effective treatments (traditional *or* alternative).
In my search for answers, I found online chronic illness/disability groups. They helped me improve my quality of life. And they taught me that it was okay for me to identify as chronically ill and disabled. This identity shift, in turn, has changed my perspective on many other things. I now see the ableism that is present in so much of the wellness industry, and the internalized ableism within myself. American society strongly preferences the abled. In an age of advanced medicine, Americans are no longer accustomed to death or disability, and they’re not comfortable acknowledging it. Even during a global pandemic, death and disability are being ignored.
The reason I bring this up is because you may notice a change in this blog from a perspective of someone who is striving to return to being abled to that of someone who is learning to accept that chronic illness and disability are (typically) permanent. In the beginning, I tried to be generic, thinking I could be all things to all people – that an impersonal, objective blog would appeal to the greatest audience. Obviously that didn’t work.
So, going forward, you’re going to experience more of who I am on this blog. Who I am is a military veteran who was accustomed to being highly competent, fit, and exceptionally healthy until several health conditions disrupted my entire life. I’m still coming to terms with that. In fact, dealing with waves of grief and frustration as I attempt to find meaning in my altered life may be the work of a lifetime.
So, if you want to read about the experiences of a person who transitioned from well to chronically ill and disabled starting in their thirties and accelerating in their forties and who is struggling with all that that entails, then please stick around, or hello and welcome. Even if you’re still healthy and abled, there might be more for you here than you think. And if you, yourself, are chronically ill/disabled? Well, you might not like all of the content either. After all, some people have been chronically ill/disabled from birth, or from early childhood. Listening to me whinge about having been fit & healthy and mourning its loss may not appeal to you either.
But what have I got to lose? My handful of followers? My zeros of earned income?
It’s not going to be easy for me to be more transparent about myself and my journey. The internet can be a harsh place – especially for marginalized community members. And some people will argue that I am not marginalized enough – that I still have many areas of privilege, which I do not deny. Hopefully some people will decide that they are interested in my journey and want to follow along.
Bottomline: In year six of this blog, the content is going to change a bit. You’re welcome to join, stick around, or wander off.
A very belated happy sixth anniversary and congrats on coming to terms with what chronic illness is about six times faster than I did 😝 not that it’s a race, I’m just amused that I still thought it was something I could find a cure for as recently as a few years ago and I’m going on what, my 25th year? I don’t know, I’ve lost track. Nevertheless, I’m sorry we’re in this particular club together but you’re good company.
Sorry for the delayed response, Revanche. It’s been one of those weeks! Yeah, I agree with the chronic illness/disability folks on Twitter – the grief comes in waves. Sometimes I’m better at accepting/dealing with my limitations than other times. And I have been able to manage migraine much better than I am able to manage MCAS, so that’s given me a lot more losses and therefore more to grieve. But I am grateful for all the friends I’ve made in the chronic illness/disability spaces online. Glad to know you and be journeying with you! Thanks for reading!
That is so true. I was crushed every afternoon when my abilities dissipated until I gave up on ever hoping to be well again and that was a gamechanger for me.
Hi Caro! Were there any particular things that helped you accept your changed circumstances?