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

As someone with a disability, I’m not faking sick, I’m faking being well. I was reminded of this the other day when I received the strangest compliment.  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.

I’m Faking being well

Faking being well is not for the faint 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 to 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.

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. Share on X

I fake my Fibromyalgia, my chronic pain, 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.