Posted on November 20, 2008. Filed under: Guest Blogger Articles | Tags: christine miserandino, invisible chronic illness ici, invsiibel illness, lisa copen, you look good, youdontlooksick you dont look sick |
“My Secret is safe with ME” – What I Wish People Knew About MeIt has been said by many people that I am a very good actress. “But You Don’t Look Sick” seemed to be all I heard. Is this a good thing? Sometimes it is an appropriate thing to say after a speaking engagement, or when I used to act in class, etc. Most times I take it for the compliment it is, all the while smiling, knowing exactly what it doesn’t mean. It simply means I am not the woman/ the girl I was before.
I “act” like a healthy person the best I can. I take on this role as if I will someday win an award for best portrayal of a healthy person. The downside, is that there is no trophy, there is no prize, I just end up alone with my feelings and everything I have kept inside. I act like I don’t care- but I do. I act like I am not scared, but I am.
Most people use the “acting” comments as a way to tell someone that they are outgoing, social, funny or even dare I say sparkle. There are those people who walk in a room and you know you want to hang out by them. Well, that is me. I have the funny story. I get groups of people up and laughing. I walk in not knowing a soul, and leave with everyone knowing my name.
What they don’t know is that this really isn’t me. What you see is a very calculated
illusion of the woman I want to be. I want to be everyones friend. By all means I hate the word illusions. I hate the tone it puts out there for others to decipher, but being plain old Christine is worse.
The illusions started small like putting on extra blush to cover up when my Lupus rash showed. Then I learned how to put on fake eye lashes to fill in when my hair started falling out. A little extra lip gloss goes a long way….It gets you farther if you remember to out it on. That is just some of the tips and ways of my disguise.
Now comes the real “art of War”- the real plan of attack. Before I go anywhere, I need to know if I am even able to drive. If I am not, can I get a ride. I need to plan to pack a huge (but cute) pocketbook to make sure it holds all my medications that I need, and my “in case of emergency” type things. Now with all this time that has past- I am already late to wherever I want to go. But now I still have to plan the outfit from the feet up, and base every choice on how good or bad I feel.
Should I wear my hair down? Or is it falling out and maybe more will come out and embarrass me. Should I go spray tanning, or go all out with the make up to cover for the fact that I am a walking zombie that needs many layers of blush and concealer. Now onto the clothes…. well, will it be hot? cold? Does this night involve alot of sitting (ouch-pain) or standing/ walking which could put me in worse pain if given the wrong choice. Don ‘t even get me started on the big shoes decision.
I would rather say that I am fashionably late to a party by making up some lavish crazy story, which then draws the conversation close and the intensity closer. The truth is, If I was to ask you if you wanted to hang out with me – I know I would not be your first choice. I am not saying that to gain sympathy. I am saying it because everyone wants to mingle/ hang out with the sick girl— But god forbid something grows out of that chance meeting…. what now?
Now I need to worry about if this person can handle my life, my choices, my energy highs and lows, The billions of things I am forced to obsess over on a daily basis. Normal healthy people obsess over shoes, shopping, what to eat, make up, TV shows, whatever. Don’t get me wrong… I enjoy all of those things too. I just can’t obsess, because I quite simply do not have the energy or time, or dependable pain free day to count on.
I have no choice, I have to live my life different from everyone else around me. I have to think about just getting up out of bed. I need to think about my medication. Do I need to stand for long periods of time? Where is good for me to eat, transportation etc…. Just so many little things that people do not put much thought into at all.
I have thought about these things so many times, it is like living in a different world, with different issues, different priorities, and an entirely different language that I can only speak. There are times when I do let go and speak to my sick friends and it feels like a light bulb has gone off – or maybe a switch has been turned on – but I feel a level of understanding and pure comfort around the people who understand both me and the “acting” me.
They know me both. They know that with me– you get the real and the fake- just to survive. If you are a good friend you can dig through the illusions and the crap and find me somewhere inside. What can I say, It is the “secret society of the sick” and I am proud but not lucky to be a member.
I hate people seeing me when I am sick and especially when I am looking sick. I really hate being pale, with faded eyes and with splotchy skin and bad hair. At least I know that some of these things are things I can work on, but others- they just are. I can’t make this big red blotchy rash go away. So I wear loads of make up or clothes that cover it up. That is my official secret. I am out!
I choose what to wear based on how bad I look. I choose where to go, by how far is it. Can I safely drive there, will the people there want to see me and be happy or excited? Will I be able to leave without any financial issues or friendship ramifications. I hate walking around in public with a limp, or worse, a set of crutches, a cane or a wheelchair. I hate not being able to wear tall sexy shoes, because I can not walk in them. I hate trying to quickly think of the much cooler reason for having a cane, or wheelchair. I hate that I don’t know a cooler reason. I desperately wish I was cool.
Big bags are trendy right now. Which is great and very convenient for me as in this role I am playing. My character wears big bags that hold lots of stuff. No one would ever know what is in my bags. Unless one spilled over- which is a nightmare I have often. I pack up every possible medical bottle or device. I pack all kinds of makeup to make me look less ghostly. I bring emergency phone numbers, I bring EVERYTHING.
I do love my life, but I hate alot of things lately.
- I hate having a scribe write for me in class or having my hands hurt too much to type.
- I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
- I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.
- I hate living up to other people’s expectations of what a healthy person should be.
- I hate living up to other people’s expectations of what being sick is.
- I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
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This is a great article! Keep reading at Christine’s web site, butyoudontlooksick.com
Christine Miserandino - founder of butyoudontlooksick.com
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Posted on November 10, 2008. Filed under: Guest Blogger Articles | Tags: christine miserandino, chronic fatigue, chronic illness and tired all the time, fatigue and illness, invisible illness, no energy, sick and tired of feeling sick and tired, the spoon theory, you don't look sick |
Something that a lot of us chronically ill people have in common is that we have limited energy. A lot of us can only do a small fraction of the thing that “normal people” do. Personally, I only have a couple of good hours each day where I can get out and meet with people, or do work for the SPCA, or even have lunch and shop with my Mom. And if I do that one day, then I’ll probably need to rest the next. And maybe even the one following.
For me, I know a lot of the reason I need so much rest (and have so little energy, a.k.a. “productive time”) is because of the side effects of my meds. I take seven different meds each and every day, and fatigue is a side effect of at least four. Another side effect that comes from individual meds, and the combination of meds that I take, is that my mind is sluggish. I often feel like I’m pushing my way through quicksand when I try to think, to process. That is pretty exhausting, too.
I sleep a lot. I mean, A LOT. I used to sleep for twelve or thirteen hours at night, be up for two, then nap for four or five, and stagger through the last few hours of the day. And when I was awake, I was so foggy, so mired in the quicksand, that my “awake” hours were not really awake, in an aware and able sense of the word.
Now, I have a new med (fairly new, I’ve been taking it since the spring) that helps to banish some of the murkiness and feeling of slogging through quicksand. It doesn’t take it away, but it allows me to have at least a couple of hours a day that I can write, or go out, or do housework, or whatever. And I don’t need to sleep so much: about ten hours at night, and I usually go two or three days without needing a nap. It might not sound like much, but it’s been a huge improvement to the quality of my life.
When I first had my breakdown, I didn’t sleep at all. I rested a lot, and I did probably fall asleep for wee catnaps, but I was desperate for sleep. Psydoc finally found a combination of meds that let me sleep (forced me to sleep) on a regular basis. My sleep today is not particularly restorative, despite how much of it I do. I think that my need for ten hours of sleep to be able to function is like the “normal” person having five or six hours of sleep a night for a protracted period. They can manage, they can get through their routines, but damn, what they’d give for a good night’s sleep. For me, a “good night’s sleep”, in terms of quality and not quantity, is hard to come by.
I’ve also found that I resent having to sleep so much. Not so much at night, but I fight and rail, tooth and claw, against having to nap. Another issue for me to work on. It’s a struggle to accept, especially when I was always on the go, constantly, before my mind finally forced me to stop.
It’s hard for many people to understand that I don’t have an unlimited well of energy to draw upon. My well is rather shallow, actually, and I have to save up the energy for a lot of days to be able to spend five or six hours at someone else’s house, or at a fundraiser, or wherever. And then the well is dry, and I have to spend a number of days letting the water rise again so I can do even the basics, like have a shower or cook a nutritious meal.
Anyway, something that I found immensely helpful, not only for my loved ones, but also for myself, was something called The Spoon Theory. Christine Miserandino of www.butyoudontlooksick.com is the one who created it. It is a way to explain to people who don’t have a chronic illness what life is like when you have one. It is a fantastic story, and I would really, REALLY encourage you to go here and read it. It will truly help you understand, and is better expressed than I could ever hope to do. So go. Now! Read it!
A former lawyer, Linds of The Muse Asylum spends her days carefully. She balances chronic depression and anxiety with her love of written and oral advocacy. Her passions include promoting animal welfare, preventing the abuse of children, and using her own experiences with mental illness to educate others.
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Posted on September 9, 2008. Filed under: Today’s News, Annoucements & More | Tags: blog, blog talk radio, but you dont look sick, but you look so good, christine miserandino, chronic illness, chronic illness workshops, invisible illness week, invisible illness week updates, lisa copen, seminars, seminars for invisible illlness week, workshops |
Are you enjoying Invisible Illness Week so far? We had over people at our workshops LIVE today so we are pretty enthused. You can also head on over and join our Invisible Illness Week “Hub” in the Sunroom, Rest Ministries Social Network, where you can blog, post discussions, mingle with others with illness, and even post photos or your favorite song.
Here is one thing to think about… what do you want to get out of the conference this year? First of all, go register so we have some idea of about how many people may be joining us for different seminars. It’s not mandatory… but you get a few goodies if you do.
One is this cute little card to print out and place on your desktop, that says, “My hope for this week is…” Think about what it is you are hoping for and place it on your desk. You can write notes on the back or on the downloadable stationary too. And the desktopper also has the URL where you log in to hear the conferences, so it’s always easy to find.
Secondly, what questions do you have for the guests? If you go to the speakers page, there are some guests who are taking questions in advance. You can just email them straight to them. If the guest you have questions for doesn’t have a link yet, that’s okay. Write them down so you have them handy. Each presenter will be taking questions at the end of the seminar, so you can send them to us then. Or… you can even call in like a talk radio show and ask them.
We may have more questions than we have time for, but we hope to have some of our speakers answer them in future posts here at this blog.
Christine Miserandino, founder of butyoudontlooksick.com (and the “spoon theory” gal as also fondly known…) joined me (Lisa Copen) to kick things off on Monday morning, September 8th, 2008.
This was a casual, fun time to chat with us gals who have lived with illness, are coping with the challenges of motherhood, who have used our illness to build very unexpected career paths, and who know what it’s like to be told, “but you look fine!”
Leslie Vernick gave us a wonderful presentation on dealin with hurt feelings and how to discern what relationships are healthy and what are toxic.
Maureen Pratt tried to join us at 3 p.m. but neither Lisa nor Maureen could get into the Blog Talk Radio line. Evidently the phone number was “so new” AT&T didn’t yet realize it was a real number yet. We’ll be rescheduling her soon, so watch here for details.
Jacqueline L. Jones gave a great presentation on alternative treatment options and how to pay for it if you find you want to use that option.
Thanks so much for a successful first day! Looking forward to tomorrow.
Click here to listen. All programs are archived!
Lisa
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One is this cute little card to print out and place on your desktop, that says, “My hope for this week is…” Think about what it is you are hoping for and place it on your desk. You can write notes on the back or on the downloadable stationary too. And the desktopper also has the URL where you log in to hear the conferences, so it’s always easy to find.
Christine Miserandino, founder of butyoudontlooksick.com (and the “spoon theory” gal as also fondly known…) joined me (Lisa Copen) to kick things off on Monday morning, September 8th, 2008.
