My Life IS My Advocacy: Pay Attention to How I Got This So You Can Avoid It.

by me
original zentangle-inspired art, by me

I was going to concoct a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions–or “wise inaction,” as it were–and I am comforted by the knowledge that many other people are feeling the same way.

For those who can advocate–and I do it at random, it definitely has its purpose, particularly in our government to let them know we’re still here–that is more than fine. If it gives you purpose, and belonging, and you feel pulled toward it, then do so.

For others like myself, I feel my entire life is an advocacy campaign. I don’t need a month, or a day: I get 365 days, 7 days a week, 24 hours a day, of this is what this disease does.

Pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.

Talking about Lyme disease or myalgic encephalomyelitis every second of every day for a month and nothing coming of it–because people who have their minds made up are NOT willing to hear anything else–is not going to help me OR anyone else, at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia. They’re just things that have passed into my life to help shape and change it into something else. That’s all.

I’ve spent the past decade as an advocate, and I think I’ve done my part. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation, but that might just be my personal experience. I’ve been blessed to help several people find out they had Lyme disease, for example, and it had nothing to do with advocacy. You can’t force the information on anyone: If they want to know, they will seek. And if they’re interested, I am here.

So instead of advocacy, myself and several, several others are focusing instead on what makes us feel normal.

Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog has been my health diary, yes, but I don’t want anyone to get the idea that this is all I am or all I do. I have friends and family and pets and hobbies and interests just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.

“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”

So, there will be no post specifically about my conditions (although I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, that make me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m so glad to know I’m not alone in this.

I’ll leave you with this link: 60 Ways To Make Life Simple Again

a rainbow at night


6 thoughts on “My Life IS My Advocacy: Pay Attention to How I Got This So You Can Avoid It.

  1. This is a really great commentary, and I love what you’ve said here. Especially that your whole life is an advocacy in and of itself, and you need things to make you apart from your disease, beyond it. SO TRUE. kdslwio! For me, I get very mentally fatigued from advocating too much. It makes me so exhausted because it is so important to me–and I have a lot of post-traumatic stress to work through from dealing with this illness. It’s not healthy for me to concentrate on it so much. If I am a lot healthier someday, I think I will have an easier time. But for now, not so much. :) *hugs you*


  2. Yes, I agree completely. There is much much more to me than M.E.

    It can be a good thing to remind ourselves of this every so often. We have such limited energy, such limited time each day. The illness can so easily be all-consuming.
    We wake up feeling exhausted after a restless sleepless night, then it’s take this tablet, eat that food, if we’re lucky have a shower, take more tablets, struggle to get dressed, interspersing each action with rest. I always try to do at least one job…yes my body is going to pay but at least I’ll have achieved SOMETHING…even if it is only to wash a few dishes or hang some clothes on the washing line.

    With such a variable illness it can be virtually impossible to establish and keep to any sort of routine. All it takes is a phone call or a visitor or a family crisis or an on-line argument/discussion or a visit to the doctor or any (seemingly small) disruption…or no identifiable reason except the disease itself decides to flair…and the entire day is blown out of the water, or several days.

    And so often we put our own selves on hold…self expression like art, craft, commentary on news, even something as mundane as discussing the weather or sitting up to watch a TV show “Maybe tomorrow I’ll feel up to it. But at least the stove top got wiped down.”

    Yet the things that make up who we are are so much more important.

    We cannot continually struggle 90% of our time with the illness & the remaining 10% fighting the battle of ignorance & willful stupidity & vested interests & supporting others who may or may not be better off than ourselves. Such a battle is draining for even the healthiest person.

    We do what we can.

    And, I think, the most important thing we can do is to be the complicated multi-dimensional interesting beautiful people we are.

    You are NOT your illness.

    I look forward to seeing your artworks. To reading your take on a whole range of subjects. To sharing in who YOU are…however much or little you choose to reveal.

    Very gentle hugs,


    1. What you said is so true. It’s a beautiful day when we can find time to get our necessities out of the way and still have energy left over to do something we enjoy. But even if I can’t do something, I’m almost always listening to music, or at least as much as I can without it draining my nervous system. I couldn’t begin to describe what an important part it plays in my life. If ever a day goes by that I haven’t had my stereo on, something is wrong! Lol!

      I’m also flattered that you look forward to my artwork! I’ll probably be posting more of my daily life here, because it seems people are interested in that. Again, that is not what I created this blog for–I have other sites I use for interacting and my personal blog for friends–but now that I think about it, it’d probably be a good thing to share who I am and what I like, if it helps others recognize the need for balance in their own lives. I like that idea! I’ll be adding new sections to my site, soon. :) But until then, anyone who wants can follow me on Twitter (link at the top of the sidebar)!

      Thank you for your words, and the energy you took to type them, I appreciate it very much. ♥

      Sorry this reply is shortish, but I’m sure you understand. :)

      Gentle hugs to you as well,

      a rainbow at night


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