What would you want to know about my chronic illness?

So, here’s the thing with fibromyalgia: it’s invisible. You can’t tell how I’m feeling by looking at me. Maybe if I was someone who wore nice clothes and brushed her hair you might be able to tell. You could guess that on days when I wore yoga pants and no make-up that I was having a hard time. But because I wear the same stretched out yoga pants and one of three t-shirts every day, you’re kind of screwed.

Pain level of 9? Pony tail and no make-up.

Pain level of 2? Pony tail and no make-up.

If I’m wearing jeans and some kind of knit top with a scarf  — CALL THE FANCY POLICE. I only have so many spoons and I usually choose not to spend them on clothes and make-up. (If you have no idea what I’m talking about, click here and read “The Spoon Theory“).

Because I often don’t look sick, or at least I don’t often look different, it is easy to assume I am well. It is easy to assume I am normal. It is easy to assume I am like you. Sure, I can do two errands in a row! (I usually can’t.) Yes, I can make last minute plans! (Not going to happen as I have to parcel out my energy very carefully.) Sure, I can help you lift that box/bag/suitcase/child! (Um, I’ve injured my back peeling an orange so lifting things is generally out.)

In the past year and a half, our family has been connected with a lot of new people and new opportunities.  And even though I have fibromyalgia, I still want to have a life. I want to spend time with friends, volunteer, engage in meaningful work with and for others. But here’s the problem: I’m not always reliable. (And, just so you know, it KILLS me to write that.)

In my other life — my life before chronic illness – I was reliable to the point of being anal. I was always early. I never missed a meeting. My life was full of absolutes: I will be there. I will honor my commitment. I picked up the slack that other people left behind.  Now I am letting other people pick up my slack. My life is full of conditions: If I don’t go to the meeting, then I will be able to get out of bed tomorrow. If I push myself to meet the deadline, then I will be too fatigued to parent after school.

Lately, I’m struggling with how to make people aware of my fibromyalgia. It’s tricky to find a balance between informing people of my limitations and coming off as using my illness as an excuse. I find this especially challenging with people I don’t know very well and am going to have limited interactions with. Like maybe we’ll work on one committee together, have a couple meetings, and then we’re done.

So, if you were volunteering with me, would you want me to be upfront from the beginning? Would you want me to inform you of my situation as things came up? Would you rather not know anything about it? (Hint: If you pick this last one, well, too bad. Keeping fibromyalgia hidden just isn’t an option for me.)

So, tell me: What would you want to know?


6 thoughts on “What would you want to know about my chronic illness?

  1. Kate

    As a friend who cares for you and wants nothing more than to support you, I wish that there was a way to look at you and gauge how you are feeling. Some kind of meter would be helpful so I could know if you are in pain, feeling tired, or conversely having a great day. Since there isn’t’, I need for you to tell me upfront when we see one another and exchange pleasantries that today my energy level is x and I am feeling y.

    To answer your questions about volunteering, I think you need to be honest about what you bring to the table and what you don’t or can’t. Your fibromyalgia may limit the physical aspects of your volunteerism but it certainly doesn’t define you or the things you do bring to the table. If I didn’t know you already, I wouldn’t know that you are amazingly creative, resourceful, witty, and awesome at research and planning. As your volunteer partner, I would probably want to know that you need to carefully weight your time and energy outputs but as a result you are good at time management and you don’t procrastinate.
    We all have limitations and I think you are especially hard on yourself about yours. The world would be such a better place if we all were as forthcoming as you are.

    1. joslyne Post author

      Thanks for this awesome response. 🙂 Sometimes I think I should make different t-shirts with numbers on them — all people would have to do is glance at my, um, chest and see that I’m at a 2 or a 10. 🙂 That or a post-it on the forehead. This was a good reminder that there are many people who, when they ask how I am, actually want to know. And that it’s okay for me to forgo the standard answer of “fine” and tell the truth. Thanks for your support on this. Having friends like you is HUGE. xo

  2. Amber

    I love what Kate said. If I were working with you, even if it were short term, I would want to know and understand.

    1. joslyne Post author

      Thanks Amber. This helps me feel less self-conscious about the whole thing. Like probably there are more people you want to understand than not. Thanks for taking the time to weigh in. xo

  3. Lisa Gibalerio

    Thank you, Jos. Knowledge is power. By sharing about this – you allow for the possibility to generate support or understanding or intimacy. If you chose not to share, I think it would be a more lonely road for you. At least it was for my mom .. . xo

    1. joslyne Post author

      Lisa, This comment really struck me. In a good way — or at least in a way I really need to be struck. 🙂 I don’t want my road to be lonely and you got right to the heart of that. Thank you so much for sharing this with me. xoxo


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