I Start this entry with the title Keeping Up With The Jones’s. It’s going to touch on some things most people don’t feel comfortable with. I was guilty of this too. With social media being what it is, we as a society have to always be on. We always have to be pretty and post plenty of pictures to show everyone how perfect things are in our lives. We don’t want to show the struggle (and what a struggle it is to appear fine when your sick AF).
I was guilty of this as well, I didn’t want people to see my daily fight against this hideous disease. I didn’t want people to see me without my make up or looking like hell. My kids humored me retaking pictures, because everyone wants too make momma happy.
I have to say my son Jake has taught me lessons in regards to peoples perception. Jake has a very carefree attitude. That young man could care less what people think. He’s Jake and that’s all he’s trying to be. I remember when he was younger and he’d put on something I didn’t care for I’d be like “Jake what are ya going for there, the homeless look?” He’d just say “I don’t care mom, I’m going to wear what I want”. I didn’t get it at all.
But now since I’ve opened up myself to this blog, I’m going to let you all in on a little secret. One of the reasons I sit in most pictures is because I look better and not so crippled sitting vs leaning on my cane. Yep I’ve mastered lying to the camera. I also make sure my wonk eye is usually semi covered by my hair so you all can’t see that my face never fully recovered from a bout of Bells Palsy. Some day’s it’s more prominent than others.
I admit I really had a hard time letting people see the REAL me. The sick and at times broken person I can be after dealing with MS for almost 14 yrs. I did this because this is what society expects. We all ask people when we see them ” hey, how are you, how ya been?” my question is do we really want to know how someone is doing? Or do we expect a big old smile with an answer of I’m great!
I remember when Jan (my bestie) and I was working police dispatch we’d answer the phone and people would ask “hi, how are you?”. After I’d get off the phone I’d say to Jan ” I don’t know why these folks ask that, I wonder what they would say if I told them well I feel like crap, but how can I help you today?” Did they really want to know? No they didn’t, we’re raised to think that’s having good manners. Don’t get me wrong it is the polite thing to say. I’m not by any means telling folks to be rude. I just know when asked how I’m doing I alway’s use my canned response “hanging in there like a hair in a biscuit” or “I’m doing pretty good” followed with a big cheesy smile. I don’t dare tell people I hadn’t shit in a week and I feel 12 months preggers, or my vision is off today or I’m having to strain to see. Do they really want to know I went through the day with foot drop and I am stumbling through my day?
With an invisible illness it’s hard not to keep up with the Jones’s. We don’t want to appear as whiners or complainers. We want to play the same game everyone else plays on social media. We want to be “normal”.
I remember back in February, when I had my last flare that left me so sick I couldn’t work. I posted some status updates regarding my failing health. Well let me tell ya, I had people (very dear friends and family) message and call me inquiring what was wrong. My response was ” Ive been sick for almost 14 yrs with this fucked up disease and I’m getting worse.” It wasn’t their fault, they didn’t realize that I had struggled every single day. After all I was keeping up with the Jones’s and pretending all over social media that everything was fine. Don’t get me wrong I do ROCK this shit disease, but I do admit now after all this time, it’s a struggle every single day.
I also have to say I’m as guilty of the same. I was talking to a very dear friend of mine that has dealt with some really trying health issues over the years. He told me he’s been fighting these issues for the past 14 years as well. This was surprising to me as I had no idea it had been this long. He like myself handles his issues really well and does not complain. I just assumed he was doing well because he’s like me a very positive person.
I think we all expect the canned “I’m doing fine” because discussing being sick is uncomfortable for the sick person as well as the person asking. It could get awkward in a hurry, the only response you can say is I’m sorry. Well let me tell you saying I’m sorry can be enough. Empathy goes a long way. Just an FYI I’m not concerned with keeping up with the Jones’s any more. Those bastards aren’t paying my bills. With this being said from now on when asked how I’m doing, I’ll say I’m having a good day or I’m having a bad day and leave it at that. No more BS from this girl, it is what it is and all that jazz.
I do have to say being true to myself and being real is liberating. Baby Jake was on to something. Smart young man if I do say so myself. So just a heads up me and my family are far from perfect, we argue (loudly). We are that crazy family at the end of the block. We as a family have good day’s as well as bad day’s and thats ok. I wouldn’t trade them for anything in the world. I had a friend tell me not long ago that I was lucky for having the support system I have, and that I’m truly grateful. I will say, I keep things positive because I still believe positive things happen to positive people. There are so many that suffer much worse than me.