Tuesday, May 26, 2009

Illness As The Ultimate Trump Card

This weekend, I had the opportunity to go up to Mackinac Island with some friends (you can find information about the Island here). I interned at the newspaper there for two summers in undergrad and have grown rather attached to the place.

The only “real life” example I can equate the Island with is the Cheers Bar. It’s the place you go where everybody knows your name. When I was there two years ago, it was like I had never left. People greeted me by name on the street, who I hadn’t seen or talked to for a year. It was a great feeling, especially because I know it is so rare to find that these days.

So as this past weekend approached, I realized that the fear and nervousness I was feeling, none of it had to do with the situation(s) I was acting upset over. In the end, it all came down to unresolved issues with illness. How was I supposed to feel, going back to a place that the last time I was there, I was working 100 hours a week, walking probably close to at least six miles a day, and not thinking that life could or would need to be any different? How do you go back to a place where the memories that exist are memories of a different person, in a different time, and maybe even a different life?

The Island felt the same as it did two years ago, despite the fact that I was too sick to visit last summer. I ran into many people I knew, who remembered me. And that was nice. It was comforting. But more than one person commented on how different I seemed. And the truth is, I’m not the same person I was when I went back to visit two years ago, or the person I was three or four years ago when I was living and working there. And maybe that’s the kicker. It’s hard to explain the perceptible changes when it’s the imperceptible ones that explain them.

And this visit, more than it reminding me of what I’ve gained, unfortunately reminds me of what I’ve lost. Health is something precious, and you don’t realize that until you don’t have it anymore. My recent flare really sent me into a depression because it made me realize how good I had felt the past few weeks, and how much I longed to feel that way again.

In some ways, the Island was the beginning of my journey with chronic illness. I’ve mentioned before that I had a severe episode of vertigo, which I have since discovered was autoimmune inner ear disease, a rare pre-cursor lupus symptom. That happened my second summer on the Island.


I’ve been forced to do a lot of soul searching lately because a lot of things have been happening in my life. And the truth is, because everyone else’s judgments and opinions became so important, it became easier to fane talking about illness in favor of the status quo, in favor of me wearing a brave face rather than cracking under the pressure.

And the reason illness messed me up so much is because what little shred of self-esteem I actually believed in without other people having to tell me, was gone. And so, in looking to others, I looked for answers that I couldn’t find because none of these people could possibly relate. And in some ways, I’m glad. I had to fall pretty hard and fast to realize that if I rely solely on others to build me up, I might as well stop trying now. Especially with illness, I’m not going to be the person that some of the people in my life want me to be. And that’s not a bad thing. But they have to understand why. And that’s something I haven’t done a very good job of explaining.

And this has become a theme in my life. A 15-year friendship is in shambles. Because I’ve changed. I’m not the person I was then, and I’m not the person I was six years ago when I graduated from high school, and I’m not the same person I was two years ago when I graduated from college and thought that embarking on graduate school would be the best decision I ever made. And lately, no one is respecting my life decisions. And the real problem with this is the fact that no one has been listening very well to me the past two years. I’ve found myself more often than I would like at a level of unhappiness I never thought was possible and in a state of utter confusion. Illness can do a really good job of messing a person up. And if you are young, I think you really have to know and be secure in yourself to sustain such a heavy blow without it setting you back.


We all have a trump card. We all have something we will not compromise on, and won’t demote past number one. I’ve learned this recently, the hard way. Realizing that you’ll never be higher on someone’s list than a four or a five is a pretty harsh reality. It makes you think about the things that you won’t give up, no matter who comes in and out of your life. And what I’m realizing is, for better or worse, illness is my trump card. It’s the one thing I can’t (and won’t) compromise on. But up until recently, I have been.

I don’t mean to say that illness trumps everyone else’s problems or priorities. But in the hand I’ve been dealt, illness is my “ace in the hole” (not exactly, but I’m certainly having fun with these “playing card” analogies). Getting back to the judgment idea, the one major thing that I’ve been judged on that I haven’t paid attention to are those who have rebuked my being on medication and lamented the potential problems I could have in the future from being on such powerful drugs. The thing is, if I spent my time worrying about this, I’d either be too depressed to function, or I wouldn’t be able to function at all because I would be too sick not being on medication. The moral of this story is that I can’t let other people’s judgments matter.

And it’s taken me a long time to get to the point where I could deliver the ultimatum that I’m about to, but I’ve realized that it has to be done. The people that want to stay and be in my life are going to have to do their part to attempt to understand. And the people that don’t see the need are going to have to get out. Because I can’t live forever with my trump card being the elephant in the room, the thing that everyone knows is there, but isn’t willing to talk about or acknowledge. It’s just not healthy for me, and it’s not really healthy for any relationships I hope to cultivate. So how about we all cut the crap and get real…

It’s hard to give up on people, and it’s hard to admit when someone is causing you pain, both physically and emotionally. But the truth is, no matter how I feel about a person, if they are consistently the common denominator in making me flare, they’ve got to go. Because when you are chronically ill, especially for me with lupus, relationships literally do become toxic. And my health and my life have to be worth more to me than someone else, no matter how difficult it is for me to put myself first. On the other hand, though, sometimes recognition and understanding comes from the most unexpected of places…


It’s weird the times when the reminder of illness hits. A bill for blood work comes in the mail. It’s $89. I don’t have to pay it. And yet I find myself in tears. I thought I was over these phases already. Thought I was over feeling sorry for myself. But maybe the truth is, I’m never going to be over this because it’s always going to be with me.

Then there are times when the constraints are more obvious, and seem even more unfair and unacceptable. Times when I wish I could have a reprieve, if only for a few hours so that I could just feel normal. Times when I wish I could throw a rock through a window, and shatter everyone’s skewed view of who I am.

The truth is, when my friends are out living their 20-something lives, I live with the very real fear that illness-wise, things could get a lot worse before they get better. And I just want someone to get it. I want someone who will be there for me when I’m at my best and at my worst, and I want someone who I don’t have to wear the brave face with all the time. Because I’m exhausted, so tired of pretending that illness doesn’t matter and that my life hasn’t changed. And I want to know that when I can’t take out the trash (lame, I know) that there will be someone there to do it for me.

Illness makes time swirl around me, and makes me feel that everything is of great urgency and means nothing, all at the same time. And “normal” people don’t get this. They don’t spend time staring at the wall, wondering what new symptom will crop up, or what activity they’ll suddenly find themselves unable to do. They don’t have to worry about time the way I do.

Sorry for the long post, but I’ve been having a hard time blogging lately, and this post really helped me get back into it and realize how beneficial blogging can be. So thanks for reading and sharing this crazy journey with me!


  1. I get that. I think sometimes being young (younger in my case) and sick is different in that it's that wonder of who is going to take the trash out, or wishing that someone would make you dinner beccause the choice between cereal again or mustering the energy to cook and clean doesn't seem like much of a choice at all. Anyway, it's good to get it out, and really some relationships truly are toxic, no matter your health, and are better left to the past. Good luck with that!

    Ok, now totally random, but the random word verification tonight generated the following combo: spermo . Just thought i'd leave you with a little giggle.

  2. Exactly, cereal for dinner. I feel like I'm a bachelor sometimes.

    "Spermo," huh? That definitely makes me laugh! So thanks for that!

  3. Our Illnesses WILL always be with us. And no one will really understand what it IS doing, HAS done, and WILL do to us.

    I understand the Elephant in the room. I understand that you feel that no one is or has been listening to you. I know all that so very well.

    I have had to weed out those that just will not ever understand me, the way I am with pain--every day--and then understand that those people have no way of understanding me, and it's not their fault, I will not be who I was in their mind--the active, laughing gal I WAS. Oh, the laughter is still there...but the activity is gone. You will see those that just have no empathy, and that hurts. Even though I know who in my family for instance, will try to understand, and then others that say that everything I have chosen was wrong, a bad decision(s)...I figure they still love me for who I am. Many are unconsciously afraid that they will end up with things we have. And they don't know HOW to act.

    Great blog...found you through the BlogFrog!!

    'Spermo'?!?!?! Excellent!! LOL

  4. Hi Shauna,

    Thanks for your nice comment. What is BlogFrog?


  5. Hey Leslie,

    Such an honest and authentic post--it's certainly tough to find places for ourselves among the healthy who, even those with best intentions, don't "get it" the way we need or want them to.

    Hope things settle down a bit for you!

  6. Thanks, Laurie. Hope things are going well with you!

  7. Dear Leslie,
    I had to read your post twice because the first time I couldn't see clearly through my tears.

    What you write about could be my life. I have actually lost a sister (and a few friends) due to my illness. It/me just didn't fit into her life so she cut me loose.

    It hurt badly for so long but then I got to the point where I figured it was her loss not mine. It was a very harsh reality check and boy did it hurt. If I were to be truthful it still does hurt if I think about it too much.

    It's probably not very nice but I often wish that people who don't get those of us with chronic illness could just live in our shoes for one day, maybe then they would be a little kinder or more understanding.

    It seems like you have had to make some very tough decisions as many do with chronic illness. You should be proud of yourself, very proud. You and your health must come first even if it goes against your nature, which I suspect it does.

    I'm glad you are blogging again as I enjoy your thoughtful posts very much.

    Take care of yourself!

  8. This sentence in particular really hit home for me - "Illness makes time swirl around me, and makes me feel that everything is of great urgency and means nothing, all at the same time."

    I feel full trapped - and yet speeding - in my life of chronic illness that goes nowhere, spinning its wheels as fast as it can. ...I think there's a metaphor about cars in there that I'm too tired to pick out..

    I just wanted to say that I really related to this post - and I really like your blog. So much so, I'm going to add you to my blogroll on the comic I write about my often comical adventures with my multiple autoimmune diseases. I'd actually really love for you to check it out - hopefully it will make you laugh, or at the very least I hope it makes you feel less alone with all this.

    You can find it at http://acomiclifeindeed.wordpress.com

    Hope you're well!
    -Miss Waxie