What I Didn't Say About My Invisible Illness When I Posted This Photo on Facebook

Yesterday I performed a fairly miraculous transformation. I was so impressed with myself that I felt the need to share my handiwork. 

I posted the above on Facebook with the caption, “Left to right and out the door in 40 minutes.” All of which is true, but there’s so much more I didn’t say. 

What I didn’t mention was how I felt. My head was wobbly yesterday. I am titrating Pregabalin slowly up to the recommended dose. This is an issue because every time I up the dosage the side effects come back. Hence, my brain was not that sharp. Along with that my anxiety was troubling me. The thought of going out alone was frightening. I was of course sore; my back and feet are a constant source of pain at the moment. So, basically what I’m saying is the first picture is an accurate representation of how I felt as well as how I looked. 

I worried and procrastinated for so long that I only had 40 mins to get ready. I forced myself out the door with the aid of diazepam, earphones and big sunglasses. I still felt exposed. I dreaded anyone talking to me or even getting standing too close. I got lucky with an almost entirely empty bus, but my heart was still pounding as loud as the music in my ears for the entire journey. At every stop I had to force myself not to get off and go home. Every bump in road sent a shudder of pain up my back. I persisted because I’d really like to have a real life.

I met a dear friend who I feel completely safe with. We had a drinks and I managed to relax to level where I could enjoy myself. The weather was lovely, the company excellent and I passed for an attractive human being.

I’m smiling in this picture because I was having a lovely time. I was still in pain. I’m always in pain. I say that not for pity, but as a fact. For my one evening’s entertainment I’ll probably require two days of rest. Today I am struggling. 

My point is that invisible illnesses are often attacked as not genuine and the weapon used can be anything we manage to do. 

You can’t be that ill if you can work.

You can’t be so ill if you can go out.

You can’t be in pain if you excerise.

You can’t be depressed if you can put make up on.

And on and on and on.

I’m offering myself as an example. Some days are good, but I never feel “normal.” There is always pain and anxiety. There are nightmares and flashbacks and urges to butcher my flesh. There are days when I can’t get out of bed and nights of no sleep at all. It’s sh*t to have to push and push to accomplish everything. We (spoonies) have no alternative — if we want to build a fulfilling life, we have to fight. Wether we’re fighting to wash some dishes or to have some fun with friends we don’t need judgmental bullsh*t to add to our burden. 

This blog was originally published on Something in the Way She Moves…