Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

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So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

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Visible in the adjustments I make just to do everyday things.

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You can see it on the pages of my planner in which I write every appointment and daily to-do list.

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Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

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Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

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You see it in the amount of caffeine I drink, just to stay awake.

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In how long it takes me to do the housework and laundry.

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Or how hard it is just to run simple errands.

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You can see it sitting on my bookshelf.

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In number of times I wash my hands in a day.

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Or the fact that a good portion of my time is spent hidden away in a bathroom.

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Illness doesn’t leave room for hobbies, much less the things that are fun.

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Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

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Or the procedures I’ve had, despite knowing whether they will work or not.

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You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

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And the therapy appointments I attend just make sure I am not crazy.

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You see invisible illness in all the paperwork I have to complete and keep track of.

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In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

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-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

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Or in the advanced directives, living wills, and Do Not Resuscitate orders.

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My illness is clearly visible in the medications I take  every day.

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You can see it in my oxygen concentrator and tank that help me to breath.

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In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

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 In my monitoring tools -in my blood pressure cuff and oximeter.

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In my heating pad and humidifier.

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My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

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And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

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You see my invisible illness in the symptoms I try to conceal and hide.

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Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

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Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

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22 thoughts on “Just stand still, look pretty.

  1. Faybun says:

    Never heard that song before, interesting. Your post about covered it. You must be going through a lot. Two people said this to me yesterday: “be gentle on yourself”. I’m still processing what it means. Hugs

    Like

    • Undiagnosed Warrior says:

      I go through a lot, no more than others in a the same situation, though. I have a full plate despite being out of work currently. You add in my school which thankfully I can do at home. Blogging and staying active in the message boards, as well as local support groups. I like being busy, just have to move it all to things I can do from home instead.
      Hardest thing is remembering to relax and rest when you need to. It’s hard to be gentle to yourself when you are your biggest critic ☺

      Liked by 1 person

      • Faybun says:

        I’ll tell you a little story. Before all this I was always active. House chores, cooking for everyone. N I am the last born. So my siblings just relaxed while I did all the cooking. Then one day my dad came back from one of his travels n called me aside and said to me. “If you overstress yourself n fall extremely sick n die, I woyuld be heartbroken and so would the entire family but we would move on with our lives…etc” harsh? Yes, but got me thinking of how fleeting life can be. Sometimes we just have to take it a day at a time. Sometimes we need to just relax and let go for a while. Hope I dint offend you?

        Liked by 1 person

      • Undiagnosed Warrior says:

        No not at all. I’ve noticed a lot of people with chronic illness were very active and athletic, and type A personalities, before getting sick. I know I was (am). It’s hard for me NOT to do something. I’ve always thought there may be a connection. Either that, or we just talk about it more.

        Liked by 1 person

      • Faybun says:

        There is, I’m quite introverted but very ambitious. I hardly take no in work, school etc. When this illness started it was like a joke. Told myself oh in a few months I’ll be back as new. Then I started counting the years. It’s crazy, you can’t make concrete plans, u can’t depend on ur mind. Your body feels like an alien sometimes. Sometimes, when I’m getting overwhelmed, I just stop n inhale n exhale many times so I dont go crazy. So to an extent I get u.

        Liked by 1 person

  2. danLrene ©2011 says:

    well said girl…been at this 35 plus years and people do not see often because they don’t want to see. If they see then they might feel compelled to do something to help. Love the song…did you write it? And now just a little side note…it can take 8 plus years to get dx with chronic illnesses that affect the immune system and many are going longer than that because doctors just do not know. In those 8 years, often we are trivialized, made to feel like we hare faking, not listened to, and pushed aside. I had someone tell me once “well I have a life to life too and family” and my reply was “but you said I was family too.” When I finally got my first dx at the end of 8 years and after lung surgery….I said “YES!!!!” and my doctor said “Oh you are glad to be sick?” And I replied “No, I am glad to have the answer for what has been wrong with me for 8 years that you doctors could not find. I have been sick a long time.”
    We also spend a huge part of our lives alone, in silence because if we have a significant other, they have to work, because we often can not tolerate all the light, sounds and activity of other people and often because people just do not want to be around other sick people. Only my closest and mean very closest people in our lives…which in my case is my son who is my caretaker….know that I spend 80 percent of my life in a hospital bed. The other 20 percent is in getting into my power chair and just moving into another room and laying back and going to doctors.

    Liked by 1 person

    • Undiagnosed Warrior says:

      Not my song but one I love. I wish i was that talented, considering everyone in my house is musically inclined.

      It’s crazy how long you can live with and hide chronic illness. You bring up some great points that I didn’t even think to address, like how doctors also choose to see what they want to see. And how very few people know what it’s really like because they’re around in the times you can no longer hide. I spent years (my entire life) minimizing my symptoms. Now, I went apologize for discussing them too much… I’m making up for lost time haha. But mostly, there NEEDS to be awareness to these problems and I refuse to keep living in shame because I’m sick just because it bothers you. Thank you for bringing light to this as well. The more people that see it, I hope maybe they’ll understand how hard it is.

      Liked by 1 person

      • danLrene ©2011 says:

        I totally understand. I think some people abandon/avoid because they just do not know what to say, some do it because they could give a rat’s ass and some do because it interferes with their happiness. My computer is my lifeline for most of my friends are online…and as much pain as I live with I still would love hugs from loved ones.

        Liked by 2 people

      • Faybun says:

        Right now, I can’t be touched so, I can’t remember the last time I got a hug. I’m learning to count my blessings. How does one even get online friends in a world full of crazy. I found one though, so maybe there’s hope for the loneliness.

        Liked by 1 person

      • Undiagnosed Warrior says:

        I think you can still have online friends. While yes, there are the crazies out there, and maybe I won’t ever meet all of my “online friends” in person, just reading other’s experiences and stories makes me feel connected to them like I know them because I have felt their ups and their downs myself. Banded together we are stronger and wiser than on our own. ☺

        Liked by 1 person

      • Faybun says:

        Thanks dear! We are connected somehow by our challenges and a quality of a good friendship is lifting up one when he or she is down. I guess we have that and I’m grateful for that. I wont trade it for anything but its slightly different from what I meant. Thanks for being there.

        Liked by 1 person

      • Undiagnosed Warrior says:

        I feel the same. Sometimes I’m sad for those who are gone but I’ve learned how loved and cared for I really am. And my online friends have made me wiser and stronger by discussing their lives, as well as making me want to fight harder to be stronger, to help others in whatever way I can. If anything, being sick allowed me to have more compassion and empathy for a variety of both mental and physical conditions.

        Like

  3. illnesscoping says:

    This entry is so on point. I feel the exact same way. Hey, at least we still look decent. Sometimes that’s all I feel I have left! However, I know the feeling of not looking sick. I never look sick, except for bags under my eyes sometimes. However, I am very thin, so maybe I do look sick in that way. People still tell me that I look very healthy, though, and even ask me how much I work out. Work out?! I sit in a chair 24/7. Lol. I walk about 1 minute total everyday. I don’t exercise, and I’m getting blood clots just sitting around. My muscles have deteriorated, and it shows in my creatine kinase blood tests. But I still look like I have muscle, so go figure.

    What happened with balding? If you’re losing that much hair, something is really wrong. I am losing so much hair too, and I have a bald spot, but it isn’t as big as yours. Mine is somewhat easy to hide, although it never gets hidden all the way. I’ll post a picture someday. My hair has thinned out so much over the past few years.

    You mentioned the online friends thing. I started a new support group. Forgive me if I already asked for your email. If I did, just ignore this. I have been asking everyone. That way I can add you to my group, if you don’t mind the emails. For now it is an email group. But eventually it will be in person too, and I’m applying for grants for transportation for people like us, where it’s hard to get out of the house. The transport people will take people one by one and use whatever accommodation they possibly can to assure they can get there and be safe when they’re there. And if anyone needs help with mcs sensitivities or anything when they’re at the group we will accommodate it and try to change the location to make sure that everyone’s needs are met to the best of our abilities. We’ll have leaders for each region. So while I may not meet you, per se, there will be people from each region getting together who share the same thing in common: Chronic illness, whether undiagnosed or diagnosed. Mostly for people who, along with illness, are super sensitive and can’t function well in normal life. Sensitive to heat, cold, chemicals, toxins, foods, etc… but the members don’t have to be sensitive of course. I just say that because that’s how I’m applying for grant money. Society can’t just leave us behind bc we’re sensitive. There has to be a way to give us some sense of normalcy and social interaction. I’m hoping more people join. So if you want to join please provide your email address. If you don’t want it public you can email me at illnesscoping@gmail.com.

    Liked by 1 person

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