I’m not faking being sick, I’m faking being well

I got the strangest compliment the other day. I was told that I am a professional organizer when it comes to my illness. It was pointed out to me that I put a lot of mental effort into making my illness look like it’s no big deal, and most people, even my husband who I live with, have no concept of how much work it takes for me to look like I’m normal. I look normal because everything I do is invisible. I had never thought about my life that way before. I just do what I need to do to manage my illness and I go on with my life. I didn’t realize I did such a good job at organizing my illness that I also do a good job at faking being well.

Faking being well is not for the feint of heart. Here’s what goes through my mind on an average day when I’m trying to schedule my life:

  • Where on my list of priorities does this activity fall? Is it a want or a need?
  • Do I have too many other events scheduled around this time? I have to build in a recovery period.
  • How long of a recovery period do I need for this activity? 
  • Is this a parenting related task? Because those get top priority.
  • Is this a parenting related task that really isn’t necessary? For example, I skipped the school field day because though parents are invited, there’s no real need for me to be there.
  • Have I made space lately to go out and have fun? Because if I haven’t done anything fun lately I need to make time for this activity.
  • Have I taken the time for self care lately? I need to make sure that I’m practicing self compassion and kindness. I can’t be there for other people unless I’m taking care of myself.
  • Can someone else perform this task? How essential am I? Sometimes people ask me for favors which I hate saying no to, but if there is someone else who can do it I have no obligation sacrifice myself.
  • Will my body be strong enough to keep up with this schedule? What happens if it’s not?

This is how I fake being well. Every minute of my life is organized. Yes I might go hiking with my kids on the weekend, but what you don’t see is that I skipped cleaning my house and making meals to do it. My whole life is an organized game of give and take. For everything I do there is something I didn’t do. I’m constantly weighing my priorities to make sure that all my bases get covered.

I fake my Fibromyalgia and my Lyme Disease all the time.

I fake them every single day.

But what I’m not faking is my symptoms. My symptoms are very real and they affect every single second of my life. What I am faking is being normal. Because I’m not normal, I’m not healthy,  I’m faking being well.

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8 thoughts on “I’m not faking being sick, I’m faking being well

  1. OMG, I’m reading this & crying. This is so true!
    I have RA, Fibro, Major Bone mass loss, Blood disorder, Arthritis just to name a few.
    My kids are grown now but I did exactly what your doing & I would do it all over again.
    Every day is a struggle but I appreciate Your reminder for SELF COMPASSION & To take time to have fun.
    Thank you For putting it into words!

    1. Ironically I was in need of some self compassion today after a long day, so thank you for your comment!

  2. I manage to put a brave face on it all the time , and I work full time. I have cfs and fibromyalgia and I often have no idea how I manage. How does everyone else manage working with cfs and fibromyalgia ?

    1. I honestly don’t manage it. I freelance from home and that’s about all I can do. Most of the people I know who work full time end up collapsing when they get home from work. Fibromyalgia and CFS take away so much from each of us.

      1. Well I totally understand how you feel . Even people close to us think we only have it on days we complain about feeling bad , I think they believe it disappears on the days we just manage it . I’m in so much pain at the moment and this is my week holiday from work . I dread going back to work .. but I don’t feel like I have an option

  3. Sharing experiences like this is so helpful. I’m recovering from cancer & chemotherapy – I saw your link through Pinterest & related to it immediately. I appreciated reading your post & Sarah a Mill’s post, too. So much of our resulting feelings or abilities are similar. It’s taking me longer to recover from our activities on Saturday than I expected.

    One thing I find interesting is how often people hear me talk about fatigue & they are quick too relate it to normal everyday tiredness … As I’ve learned all too painfully, fatigue is very different from jyst being tired.

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