The guilt, oh the guilt.
As if having a chronic illness wasn’t bad enough, there is a heavy dose of guilt that goes along with it. For someone who is healthy, a fibromyalgia flare up feels like when you get influenza and felt horribly achy all over. Getting a migraine isn’t just a headache. It is the most intense pain along with nausea, sensitivity to light, sounds, and smells.
The struggle is very real.
In the early days of my diagnosis, after the shock and denial wore off and I started to accept this is now my life, the guilt came in slowly.
At first friends and family were understanding (some of them always are for which I am forever grateful) but slowly they get tired of reasons why you need to go home early or cancel plans. Then you have jobs that don’t understand why you are always so sick. In my early days of diagnosis I went through having mono twice, complications to getting my wisdom teeth out (bad dry sockets and a very serious infection), and was in a minor car accident (which one of my doctors thinks is the cause for the severe slipped disc in my neck now). Through all that I also had migraines and fibromyalgia, while going to college, working, and trying to find my place in the world. I had all the typical stuff going on the average 20 something does, but I was struggling (and failing) to find a way to manage my health and just live.
I made so many bad decisions in the early days. I know I had employers who thought, “oh she’s in college she is probably just hung over and doesn’t want to come in” and while that may have been the case every once in a while it was much more fighting this never ending pain. I actually rarely missed work for a hangover. A hangover seemed manageable compared to my bad pain days in my 20s.
Even after I graduated from college and went into the working world, I fought employers about my health stuff. I would desperately try make it through the day or come in late (mornings are the hardest time for me pain wise). I brought in doctor’s notes, information about my illnesses, and I still lost so many jobs because I couldn’t make it in. Because they didn’t believe I was truly suffering. No matter how much my doctors backed me up, in the end it just didn’t matter. While I get it, they need someone who comes in everyday, so many people suffer from serious chronic health issues. I am fortunate that I have people to support me when this would happen, others aren’t so lucky.
I felt so much guilt and shame over losing jobs. It is so hard making it day to day. Many of my coworkers saw me at my worst pushing through, and still didn’t believe me (again some of them did and I am thankful to those people). Many of my bosses knew I would stay late or come in on my days off sometimes to make up the time I missed. They knew I was fighting to make it right. To make up for the missed time. Yet in the end, for some of them, it didn’t matter. Or it was out of their hands with their higher ups. I would be let go, and I would turn into a mess of guilt, tears, and anxiety. It is one of the many reasons I turned to writing, I can write from home when I feel up to it.
Then I had kids and a whole new batch of guilt came with it. Along with the normal mommy guilt, I have guilt about the things I can’t do sometimes. I had to cancel play dates and appointments because I had a migraine. I never make promises for what we will do the next day because I could have a huge fibro flare up or a bad migraine that makes it impossible for me to have the energy to leave the house. Then there is the unknowns, will I get worse in the future? Will one of my kids get this curse from me?
Only time will tell what will happen, so for now I worry, wonder, and feel so much guilt.