I was just reminded of something and I want to share because this an example of a MAJOR issue that people (mostly women) with AutoImmune disorders and chronic conditions face.
I was on the phone with my mom today telling her how great I felt. She was pleased, and commented how great I looked when she saw me this weekend compared to the time before that (the headache of 2009 —yikes). We both know the deal all too well…
That’s the thing with these mysterious illnesses: One day you can look and feel like a million bucks and people will see you and never ever be able to comprehend the misery you were living just a few days beforehand.
I can feel like hell unable to move from bed one day and wake up ridiculously well the next. It is unpredictable and unfair.
I used to live in a big loft with six other people. I was the only girl at the time and I remember one of the roommates watching me open my drawer of medication one day and saying clearly to my face “Wow Manic Depressive”.
It stung and it hurt my feelings so bad. I closed the door to the bedroom and felt so awful I wanted to crawl under the wooden floor. How do you explain this condition to someone? Especially a young(ish) dude (no offense but most of you aren’t exactly models of compassion, willingness or understanding)?
Then I took a breath and realized why he thought this. I had just been in bed for like three days with pain that kept me from speaking. I didn’t even open the curtains. It was a terrible time for me. All this dude knew was that I was in the room for days and hadn’t emerged except to use the bathroom. Then he sees me digging in this drawer filled with a variety of meds? Understood. Still, he didn’t have to say it like that…
The truth is that isn’t the first time something like this has happened to me. And each time it hurts because you feel alone and misunderstood. And all you wish is for everyone to understand what it is you may be going through.
And so I continue to write about these very frustrating, very difficult times in hopes of spreading some understanding.