Keeping Up With Appearances

Maya Angelou hit the nail on the head when she shared a bit of her philosophy in life.  

 “I did then what I knew how to do. Now that I know better, I do better.”

It seems like, for the most part, we do the best we can until we know better, and then, we do better. It’s not linear and it’s not always that way for every person, but generally speaking I think we could agree that most people are trying to make a better life for themselves the best way they know how. It hit me like a ton of bricks the other day, as females we are taught from, well, forever, to be better or ‘do better’ is to look or ‘appear’ better. At least that’s the way it was in my home, to a degree. I was given rules my male cousins were not. I was to ALWAYS sit with my knees together and usually not allowed to speak to adults, except my mother, unless spoken to. Wonder why I’m so shy!? Additionally, I was taught rules about the corresponding colors of clothes and seasons, to always smile politely, to never disagree, but instead keep my opinions to myself. Basically, I was to sit quietly, properly, and keep my mouth closed and my eyes wide open. My male cousins on the other hand had none of those rules. Jeans and a t-shirt and the rest was ‘boys being boys’. I respect that my mother was trying to raise a proper young lady on a cattle ranch, god bless her, she tried. She grew up in another time, another place, another world from where we were. There were many other rules for me to abide by, but I guess my point is for me to a better person in her eyes had almost everything to do with appearances, whereas my cousin’s devotions to success were more aligned with fishing or motorcycle riding, physical achievements if you will. So where am I going with this?

When you’ve been taught that appearances are everything and it’s so deeply ingrained in who you are that you don’t know where that ends, and you begin, adding a chronic illness to that can be an added level of shame that people don’t often discuss. In the community we call MECFS an ‘invisible illness’ but truthfully, it’s not invisible. At least not for me. I’ve aged dramatically in four years. My idea of what my appearance should be has gone out the window. I don’t recognize myself in the mirror and I don’t know if I ever will. Thankfully, since I’m mostly homebound, my dog and kitty cats don’t care that my hair is different shades of grey or that my face is wrinkled, they don’t even care that I move at a snail’s pace, they just want to cuddle and eat food (Now that I think about it, that’s a good plan!). It’s when I go out in public that reality sets in, that I feel ashamed, when my gait is off and slow, that I appear drunk when I don’t even drink, when my hair looks disheveled because I don’t have the energy to keep up with it, when I can’t make simple decisions or fumble over my own words, when not wearing makeup shows the world I don’t care if they care, when I have all these unspoken expectations bouncing around in my head trying to make me feel less-than, it’s then that I feel like I failed myself. I don’t know if men with this illness feel this added layer of shame or not, but I can tell you that acknowledging it, accepting it, and trying to be okay with reality has helped set me free a bit.

Much like raising a child, it started off small. In the beginning it was mostly my gait, slow movements and mental processing time. So, I learned to follow the thought process of, yes, my gait is off and I’m slow as molasses, but look at me, out of the house today…you go girl! And then as the chemical sensitivities set in it graduated to, yes, I have no make-up on and my hair is a hot mess of colors, but I do have a smile on, that’s more beautiful than any make-up. And now I’ve reached, yes, today is a wheelchair day, but I’m here and I’m fighting so hard to be here that even though I didn’t have the strength to walk I still showed up. The funniest part of it all is that I’ve never really cared much about fancy hair and lots of make-up preferring to keep things very simple. I’m a self-proclaimed plain Jane who’s always tried to pull attention away from me instead of toward me by absolutely blending into the crowd. Despite that, it’s still a struggle, I think in-part because looking out of place does pull attention my way, and I cannot just blend in as I once did.

I’ll leave you with this. I once had a very wise boss tell me, “Don’t come to me with problems unless you’ve thought through solutions.” So, it’s a little like that. Yes, my appearance or how I appear feels problematic but the solutions or the reality is that what you see on the outside isn’t the whole story. And I need to own my truth, despite what others see when they look at me, I’m fighting for my best life. I’m combatting those thoughts as best I can, and in Southern California of all places, where looks and appearances are really important to other people, it’s a steep hill. At the end of the day though this is my life to be lived as best as I know how and right now, my ‘doing better’ has nothing to do with appearances and everything to do with physical achievements. I guess me being a ‘Tomboy’ is finally paying off. 😊

Thank you for stopping by for a read! I appreciate that you took the time. I hope I didn’t ruffle any feathers I was just sharing from my personal experiences. I know it’s a touchy subject. Hoping today brings you reasons to smile and laugh.



29 thoughts on “Keeping Up With Appearances

  1. I totally agree with everything you haev said in this post. Love the header with the flower heart and the writing. The veggies and the scarecrow are very cute too. Like little human characters. I really think people need to stop judging people on appearance and placing expectation on how we have to look. Plus for people like us, do we actually have the time and energy (spoons) to wake up every morning and do our hair and makeup. No. I think this is a new powerful message we need to start spreading as we shouldn’t judge people based on their appearance, it’s the person inside who matters.
    I would love if you could paint a few turquoise coloured ones for Dysautonomia Awareness month.

    Liked by 3 people

      1. OK. Rose Elaine painted me a beautiful angel with a turquoise background and ourlittleredhouse is goign to be sharing some turuoise coloured craft too so I hope to share them all some time during this month, maybe I can put the challenge out to people.

        Liked by 1 person

  2. You might want to check these posts out to find out more about Dysautonomia.

    Liked by 2 people

  3. Sometimes I think you’ve read my mind with these posts! I’ve been feeling sad about my appearance lately. Just looking at myself in the mirror, I know I *look* sick – my face is sallow and my undereye bags seem to have encircled and devoured my eyes! And it’s rotten dragging myself around the house, hunched over and poorly. Like it would be nice to be able to stand up straight, especially in nice shoes! And feel confident. I don’t really care what other people think of me but I want these things for myself.

    Liked by 2 people

    1. Well for what is worth, your photos on IG and here are beautiful. But yes that confident stride of feeling on top of the world, full of vigor and life. I miss that too, very much. My SO frequently says to me, “Are you going to stand up straight today?” As you can imagine this evokes the facial expression of Not Today, not today. 😕 And so very true, it is for ourselves, it absolutely is. Hoping today treats you kindly. I imagine it’s warming up nicely where you are. 😎🌻

      Liked by 2 people

  4. So very true, both about how the external doesn’t tell the whole story, and how actually illness can change our appearance to differing degrees in differing ways, whether that’s grey hair or hair thinning, weight changes, slowness of movement, dark under-eye circles or what have you. It made me so sad when you wrote that you felt ashamed in public. It’s certainly a tricky one, but I’m with the cats here – it should be about cuddles and food and sod the rest of it, it doesn’t matter. Oh, if only it were that simple! “I’m fighting for my best life” – so powerfully said  ♥
    Caz xx
    PS. Love the little veg family!

    Liked by 4 people

  5. I’m not sure if I’ve visually aged a whole lot, but I’m not as proud of my body. I used to be way more toned and fit because I could be more active. I’m not fat, but I am out of shape and I miss feeling good about my body.

    Liked by 1 person

  6. I am learning slowly but surely the importance of the fact that I showed up. (no one really cares HOW I got there, just that I got there) In fact, I have had two people in the month before surgery stop me on the street, and tell me that I motivated them to get motivated because I was out walking EVERY day, rain, shine, some days with a cane, and some with the wheelchair. I wasn’t doing it to impress anyone, but I am flattered that I was able to encourage others

    Liked by 3 people

  7. Hugs. EDS is known for making you look young, which I now know was probably a saving grace for a long time as I can’t stand the feel of sticky lotions and makeup as one of my ADHD sensory issues. The natural tendency to look young made me able to pass without makeup. But, then allergies started getting out of control, and dysautonomia hit hard. Now I still look younger than my age…but sick…without makeup. Dark bags under your eyes can erase the EDS smooth skin effect pretty quick. Add red puffy eyes, and then I worry people will think I’m hungover. I’m at a trade show and finally decided I had to suck it up and at least where makeup for fear of people assuming the worst about my professionalism. But, this brief work trip has revealed yet one more benefit of the remote work thing: if I can’t fake well without makeup in professional spaces, best avoid them as much as possible :-p

    Liked by 2 people

      1. Well, it will at least make panic attacks easier. Guess who just got a text while at said trade show from the other co-guardian in the 9th Circle of Hell that they just found out the “bedbug” group home lost its license with the last three hours? So…when you see whatever my next post ends up being just know the transition from the lighthearted tone I was expressing in my comment on this thread earlier about this trade show to whatever I later write really did shift in the span of the three hours. Makeup: apparently doesn’t help when you are fighting tears… (Also, this is mid-panic attack me sitting in a staff break area of a conference center feeling compelled to go “please believe me” because I fear my colleagues won’t later and that is panic spiraling me into “what if even my blog friends see the rapid tone shift and (don’t believe me and…and…” And, I’ll shut up now b/c of the aforementioned panic spiral making me incoherent and needing to pull myself together to go handle colleagues and catastrophe.

        Liked by 1 person

      2. I am going to be tested for EDS soon and am almost positive I have it. I also knew about the “looking young” aspect of it and definitely have that myself, but I agree the sickliness can take a toll on looks too!

        Liked by 1 person

      3. Oh no. I will say this with limited knowledge, I know there are moments in life where it literally feels like the wheels are coming off but there’s someone out there that will ground you. I’m thinking it’s your hubby. Let him shoulder the weight until the puzzle pieces start to feel like they are falling together. You aren’t in this alone. Lots of assumptions made there but I have a feeling they may be okay to have made. I won’t placate you but I will say stop what you’re doing, breath, for a few minutes listen to some music, be in the moment, or eat a cookie whatever it takes to stop that adrenaline rush. Hugs

        Liked by 1 person

      4. It’s unfortunately not him. He hasn’t responded to any of my texts, calls or emails today. Every ounce of C-ptsd abandonment history in my own childhood is telling me that this latest severe crisis was too much for him and I’ll come home to find he ran like everyone else. Trying hard to fight that core hurt, but it turns out the people who offered comfort were you and my other readers. So…thank you. I still have to hold it together by the skin of my teeth through 24 hours and one twenty minute presentation tomorrow, but you all at least helped when I was frozen in time in a generic hotel break room. I’m now frozen in my *own* hotel room on a real bed with covers because dissociation makes me literally feel freezing (or maybe it’s just standard dysautonomia :-p) So…thanks. Really. And sorry for kind of panic spiraling on your blog in real time. It has been a really traumatic…day…year…life?

        Liked by 1 person

      5. Life happens. I totally understand, more than you would like believe. I was worried I was being too pushy. I’m sorry he’s stepped back. I’m hoping he’s just getting a fresh breath of air. I’m sorry, though, that’s he’s pulled away. I know that feeling of fear of abandonment and it’s not a good place to be. Please no apologies. I’m glad you are okay. And now I’m going to give you my email. 🙂


  8. Love your paintings as always 😀

    I feel more freedom now….I truly am not concerned by others opinions of my looks or what I am wearing. I feel like a super hero by just turning up! And only we know how much that takes to do just that!

    I have aged greatly too but I’m comfortable with who I am & the way I have aged in this FM/CFS journey, a super Granny doing her best each day to live her best life 😀

    Liked by 1 person

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