She Doesn't Look Sick, She Just Needs To Suck It Up
Another missed event because I don't feel good, I never feel good but since Saturday night I've barely been able to walk. We put up the Christmas decorations and it was just too much for me even though I really didn't do a lot of it, it put me into a huge flare up. Over the past few months I have been having more bad days than good days and I have to tell you I'm really struggling with it. On top of all of the effects of my disease is trying to deal with the disapproving faces when they find out I am no longer working, that I can't show up to some event or carry a box in from the other room. I was watching a show the other day about these women with MS, like MS, RSD is a CNS class autonomic nervous system disorder and like MS you don't look sick. People have a hard time understanding why you can't do something because you are just in too much pain because you don't look sick, because you should just get over it. I understand how they feel, truth is I would probably think just like them if the situation was reversed. The thing is, even though I understand why they don't get it, it still effects me.
I am so fucking tired of having to explain why my pain is different than a back ache, sometimes I think I should print it on a t-shirt or have a brochure to hand them. Honestly I've worked with phenmonia, slipped disk and several other issues so I understand pushing through it. I never called in sick to work even when I should have. I spent decades never complaining about being in pain, I spent decades showing up when I was sick but now I am 'faking' it to get out of having to work or show up to some event. If I looked sick people would believe me, if I looked sick they wouldn't whisper behind back or give me that blank stare. These woman with MS on the show talk about how hard it is emotionally, to have family and friends doubt them or discount what they are saying. It feels like I am always on the defensive having to present people with all of the facts of RSD, which still I feel like I'm being judged. Honestly, do they think I enjoy this 'new' lifestyle? I'm bored, there is only so much TV you can watch before you feel like you're losing your mind. I was always the go to person whether it was for the school, a friend or some charity thing and I always showed up. Now all of that has been forgotten, now I am 'lazy', 'dramatic' or 'faking' it.
What am I suppost to do, go out without makeup wearing frumpy clothes? Should I look the part to make people believe me, maybe I should shave my head. Would they believe me if I dressed the part? Why, why should I have to stop caring about the way I look so someone might believe I am truly sick? Having a chronic illness of any kind is, well, it's isolating between the inability to go places and the loss of friends it is very lonely. Going to work everyday gives you a social outlet, even if you hate your job which was not my case, I actually liked my job and the people I worked with. Add the guilt, guilt because the house is a mess or I don't have enough money to help with the house becuase I'm not working and my medication is not cheap. Guilt becuase my husband feels neglected, I can't go on our planned 'date night' or take my daughter for a day mother daughter bonding over shopping and lunch becuase I am having a flare up. What do they think, staying home is fun that I am living some glamourus life filled with shopping and champagne in the afternoon? Here is the reality, yesterday I spent the day lying on heating pads because the spasms in my back and shoulders were so intense I couldn't stand up and not even percocet or flexoril made a dent in the pain I was in. It's not glamourus, it's not fun, it's lonely, depressing and I would give anything to be able to bitch about having to work.
So yeah I don't look sick, I did spend 10 minutes putting on some makeup and I got dressed. Hell I wouldn't go to the mailbox without at least a little concealer, blush and lipstick no matter how bad I felt. It is not in my DNA to just let myself go and yes I put a smile on my face when you see me because that is how I was raised. We don't wallow, we don't go out in public looking like we rolled out of bed and we do not wear our emotions on our sleeves. I have an autonomic nervous system disorder it does not change my appearance, you can't see my disease, the damage it causes or the pain I am in. When I tell you I can't go because I am in too much pain, I am not talking the kind of pain you are in from a slipped disk (which is pretty painful), I am talking about the kind of pain you are in when you give birth or if your finger were being cut off and I am not being dramatic or trying to get attention (seriously if I wanted attention I would show up wearing a red dress and stilettos, way more fun and scandalous which is definitely more me). I come from an upper middle class background, I live in an upper middle class neighborhood, I am intelligent and I have always been highly social. I shouldn't have to 'explain' myself constantly or justify my disease because I don't look sick. The worst part is that it actually causes me doubt, I question myself but then I put up Christmas decorations and end up spending 3 days unable to even shower because the water hitting my skin feels like razor blades.
Everyday I know one thing, I will be in pain and every night when I go to bed I know when I wake up it will be another day of pain. Tell me I am weak but remember every morning I get up anyway.