Invisible Illness, Look Again

Well as any good little chronic illness does, mine is flaring like a wildfire on a hot, windy day. I blame Thanksgiving, but there’s other stuff going on too, so who really knows. Anyway, in looking through my list of blog ideas I landed on this one…photographs. I’m trying to practice a little self compassion in doing this topic as writing these blogs wipes me out and this one seems pretty straightforward. 🙂 So let’s get on with it!


This illness I have is sometimes referred to as an invisible illness. That is partially true.  I do not have any visible aids, like a wheelchair, although if money were to be raining from the sky, I certainly would! I do not have a visible impairment, so I guess, yes it’s invisible to others.  To me though, and likely those who know me well, but are too kind to say anything, it’s far from invisible.

Here’s a quick list of very visible changes this illness has gifted me:

  • Makeup – My eyes have taken such a big hit with CFS. They vacillate between tearing, feeling glued together and feeling so dry that I cannot move them. They are often red, puffy, have dark circles and bags and most disturbingly as the day wears on my vision fades. Putting make-up on them not only irritates them but it just runs off with the tearing. So no more make-up for this girl. Thank gosh for glasses!!
  • Hair – My hair was speckled with grey before CFS, but due to pernicious anemia, since CFS, it’s grey, grey.  Due to my chemical sensitivities coloring my hair causes a big flare, so not worth it. Oddly, I started feeling crappy after getting my hair colored before CFS so I’m wondering if it’s FM related. Also, I only get my hair cut every eight months or so now as it’s a lot of energy. Luckily I have the world’s best hairdresser and her cuts can grow forever and look just fine. Also doctors don’t seem to care how my hair looks and they are really the only ones that see me regularly, outside of my family, so…it doesn’t really matter.
  • Earrings – I’ve worn earrings every day since getting them pierced about 40 years ago, my pearl earrings were kind of a part of me, but within days of becoming ill I could no longer lay down with them on as the pain was too intense.  Isn’t that crazy? Not a big deal as I can easily pop them in, just kind of miss looking in the mirror and seeing them. Silly I suppose…
  • Skin – So dry, like alligator dry, and wrinkly and pale, oh so pale.
  • Posture – ‘Stooped’ as the doctors put it in my charts.
  • Gait – “Like an 80-year-old woman” as two jerk doctors have said to my face.
  • Face – With flares I now have an uneven smile as if the right side can’t be bothered as much. I also sometimes stare blankly out into space like a zombie.  Sometimes I know I’m doing it, I just don’t have the energy to do anything else.

I’m sure you’re getting the picture!  I look like a much, much older version of myself and it happened pretty quickly. It’s as if my body is being taxed something terrible and physically it’s really taking a toll on the outsides, as well the insides. If I then told you it bothers me I’d be lying. It doesn’t necessarily bother me. I’m only bringing it up because I don’t feel like this is an ‘invisible illness’ per say.  It is written all over us, all you have to do is look. I actually have before-and-after photos I take to new doctors so they can see the progression. So I’ll wrap this up with too many a few pictures.  You’ll notice two things: 1) THIS ILLNESS WILL NOT STEAL MY SMILE! 2) This illness is not invisible. This is a four-year progression.

Before:

Holiday party 2013
Holiday Party 2013 (sorry for the funky color 😉

 

Beach Walk 2014
Beach walk May 2014
Resting 2014
Resting June 2014 (In reflection I was getting more tired the month prior to getting sick…)
Fourth July 2014
Fourth of July 2014 (My last night out like this before falling ill. I felt so great in this picture. Moving on as it’s making me teary)

 

After:

Austin and Me 2016
My son (he’s 6 foot 8!) and me Nov. 2016

 

Windy Beach 2017
Watching a windy beach sunset…rare excursion out of the car to watch 🙂 2017

 

Close up
Close up and personal 2017

So that’s it.  These pictures are enormous (on a desktop) but it was either that or thumbnails and I wanted you to be able to see the actual progression, wrinkles and all.

Thank you for taking a look today. If you are a fellow warrior and you have seen dramatic changes in your appearance too, I hope this helps you feel less alone or less upset when you look in the mirror. I’ll save my little paintings for next week as I imagine you are all ‘pictured out’. Please take good care spoonies, the holidays can be rough on the soul.  Be kind to yourselves.

32 thoughts on “Invisible Illness, Look Again

    1. I’m sorry to hear you’re on this path too. It’s a youth thief for certain. I remind myself often … I’m just glad to wake each morning and feel blessed for all that is in my life. It’s really something to not recognize the person in the mirror. Hoping things are going best as they can for you! 🌸

      Liked by 1 person

  1. I think you are beautiful! Before *and* after CFS set in. I think you are more beautiful after, because of all the internal struggles you are coping with and still putting on the smile. 🙂

    I have heard similar things about my gait and posture before… sigh! My physical therapists worked really hard on me for a year to correct much of it. I try to follow their advice, but it can be SO much effort to sit up straight. It is impossible to explain to other people how exhausting that can be. Also, I had an identical experience with earrings. I used to wear studs or rings all the time, and then several years (and the FM started “building” I now think), it hurt so much to lay down with them that I couldn’t wear them to bed any longer.

    Liked by 4 people

    1. That’s incredibly kind of you to say! I can honestly say the smiles ‘after’ are from the heart as I’ve begun to appreciate things (like family and sunsets) so much more deeply.

      So true with PT. I do a little PT exercise daily where I stand up completely straight when I wait for my teapot to boil. Any longer than that and it causes excruciating back and chest pain, and that pain leaves me unable to do more than sit in bed. I try though, to stand up, sit up, what have you, but as you know the energy feels like it’s seeping out of your body and just being present in the moment is sometimes all we have to give. Posture comes somewhere behind dead last.

      Hoping you are enjoying your new position and today finds you doing as well as possible!

      Liked by 2 people

      1. “I can honestly say the smiles ‘after’ are from the heart as I’ve begun to appreciate things (like family and sunsets) so much more deeply. ” << That is a beautiful thought! Kudos to you for finding that kind of "glow" inside yourself. I think I still struggle sometimes to put on my best face when I feel crummy, especially in private when I feel I can be honest and not be judged. Unfortunately "honest" is not a happy-face for me a lot of times.

        I know what you mean about the pain and fatigue for standing up or sitting up straight! I definitely try and make my desk area as "comfy" as possible, almost making a makeshift recliner of the area. I know it's bad posture, but I need some relief if I am to be functional!

        Thank you for all the best wishes! I think I might need it! I start work on Monday, and I am kind of a little "unsettled" right now. I suffer from social anxiety so any situation where I have to meet/work with new people is very nerve-wracking for me. It's not helping that I have been dealing with some combination of tension headaches and migraines for several days at this point. I hope they ease up by the weekend!

        Liked by 4 people

      2. Hoping that headache / migraine lifts! And you are able to enjoy the next few days. Sometimes in that situation, like a new job, I just tell myself it’s not going to matter in a year, so let it go now. Because honestly we don’t remember our first days. We remember the people, the tasks…

        I spend my days in bed surrounded by pillows. It’s the only time it doesn’t hurt just to be sitting. Anywhere else and the pressure on my body from the chair alone starts to hurt. Lactic acid is no friend of mine. Take good care!🌼

        Liked by 1 person

  2. So at the end of you post mentioned wrinkles, just an fyi, I had to go back to your picture to look again to see IF YOU EVEN had any. You are absolutely beautiful, and your smile is captivating. (I swear I am not hitting on you) It makes me crazy when some one says “but you look so good, you cant be sick. But then I remember I didn’t understand invisible illness til I was diagnosed. I have my tysabri infusion on friday and I always look like I am dying during it…maybe I post that picture somewhere and then someone tell me that I dont look sick?

    Liked by 3 people

    1. You’ve made me chuckle! I didn’t think you were hitting on me😊 Thank you for your kindness! I think when we feel wretched and people say ‘you don’t look sick’ we deserve a prize or chocolate or something for not blowing a fuse!😁 I think being honest is a great way to spread awareness. Social media kind of leans is in the direction of showing our best but the truth is we are chronic illness warriors now. Maybe we need to show more of our battle pictures too. I dunno, just rambling taking up your energy…😬 sorry🙊 Hoping your day is best as possible and sending you strength and peacefulness on Friday🌼🌸

      Liked by 1 person

  3. Emma (Not Just Tired)

    You are still beautiful. Very brave of you to share this. It’s funny (not in the haha sense!) as I was also recently looking back at some old pics and it’s amazing how much healthier I look before illness. It’s so draining living day in day out with these illnesses that I don’t think we can help but wear our pain. Like you say though to most it would likely be invisible. Often I miss my old sparkle but maybe one day it will come back! Great idea to share photos as it really brings to life your article 😊xx

    Liked by 3 people

    1. Thank you, Emma! It was actually kind of difficult to put them up there, especially the last one. Almost like admitting defeat to the illness. Weird I don’t exactly know how to explain it. Mostly I just wanted other people who may be feeling down because of the toll it takes, the very rapid aging, to know it’s not just them. And yes we will most definitely get our sparkle back!✨ I remain confident in that!!😊 Hoping your day is best as can be🌸

      Liked by 1 person

  4. you look lovely in ALL of the photos, but i can completely relate to what you’re saying. my illness is “invisible”, but i feel that if anyone really looked closely, it’s incredibly visible. my eyes are always red with dark circles, my skin always dry (despite living in a humid region), my joints always crack and i often limp a little, i can’t stand still without swaying like on a boat, my limbs and chest are usually redish- purple, etc.

    great post, thanks for sharing!

    Liked by 3 people

    1. Thank you for your kind words🌼 I’m sorry to hear you can relate as I know how hard it is to see your body change in ways you’d never choose for yourself. And Yep, I’ve got that sway too! I once had a lady (in scrubs mind you) in a parking lot look at me as I wobbled forward shake her head and look away. It’s frustrating because we give our everything to make it outside and then people can be so critical. Oh well can’t let others steal our sparkle!✨ Thank you for reading along and hoping your day is/was best as can be!🌸

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  5. I can so relate to your post. Before CFS I worked out, dressed Weiland had fabulous hair. Now I rarely wear anything other than “comfy clothes”,I rarely have the energy for make up, seems like a waste of spoons most days. My hair is the greyest it’s ever been. You’re right- colouring your hair does flare you. I get sick for a day or 2 after..

    Liked by 3 people

    1. Thank you for checking out the post! I’m sorry you too can relate. For me it’s not as much a vanity thing as an aging decades seemingly overnight thing. It’s weird to look in the mirror. Every single time it feels like – eeks, girl you look rough.😬 Ah well way too many things to be thankful to worry about that. Hoping you find answers on your .com adventure. I learned a lot in the comments section of your post, although wow it’s a lot to understand! It took me a good while to just figure out WordPress. Wishing you the best of success on the endeavor!

      Like

    1. Indeed it is. Especially when it’s much sooner than anticipated and happens so quickly. The grey…well I tell myself I’m happy my hair is still there since so much else has gone wackadoo.😊 Hoping you find answers! There are a lot of people out there undiagnosed so please know you aren’t alone. Many of them seem to have Lyme. Take care.

      Liked by 1 person

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