Monday, April 20, 2009

Deny, Deny, Deny

“Sometimes reality has a way of sneaking up and biting us in the ass. And when the dam bursts, all you can do is swim. The world of pretend is a cage, not a cocoon. We can only lie to ourselves for so long. We are tired, we are scared, denying it doesn’t change the truth. Sooner or later we have to put aside our denial and face the world. Head on, guns blazing. De Nile. It’s not just a river in Egypt, it’s a freakin’ ocean. So how do you keep from drowning in it?”

- Meredith Grey, “Grey’s Anatomy”


“Look into the depths of your own soul and learn first to know yourself, then you will understand why this illness was bound to come upon you…”

- Freud


“[…] It’s hard to see the pain behind the mask
Bearing the burden of a secret storm
Sometimes she wishes she was never born
Through the wind and the rain she stands hard as a stone
In a world that she can’t rise above […]”

- “Concrete Angel”, Martina McBride

Friday was the first anniversary of my blog. For the weeks leading up to it, I was really planning to make a big deal about it; about how much has happened over the past year and how far I’ve come.

But the truth is, I haven’t come that far at all…

Yes, I’ve become a pro at telling people that I have lupus and rheumatoid arthritis. What I haven’t become good at, however, is accepting my limitations. Well, I think I’ve come to accept them for the most part, but I haven’t gotten over the fact that I need to tell the people around me about them.

It’s really hard for me to admit this. In many ways, I thought I was coming to terms with illness. I thought I was beginning to grow into this body, starting to feel comfortable in this skin.

But it has come to my attention that my filling this semester with loads of stuff has been for one reason and one reason only: to act like I’m not sick. This attempt has, however, been an abject failure. Why? Because regardless of what I was trying to prove to myself and/or others, I ended up last on the list yet again.

I tried to take comfort in things that I assumed would take away the emotional, and maybe even some of the physical pain. But the truth is, all these things did was cause more pain than was already there.

And then my body fought back and put me in the most pain that I’ve been in, in a long time. It was only then that I realized what the problem was. I am sick. And I can’t continue to live my life as if I’m not…

Would I like to think that there is some cosmic occurrence behind all of this? Sure, but honestly, I’m not sure what I believe anymore.

I used to believe that modern medicine was truly amazing. But it just goes to show that when you end up with all of the symptoms at one time that modern medicine has learned to treat, it is powerless against them. I mean, I’m taking medications just to counteract the side effects of other medications.

The truth is that there is very little beauty to this experience, no real deeper meaning or truth. There is no hope that one day life will go back to normal. Maybe there never was a normal. Maybe there was only a time when life didn’t suck this much.

Because even today, I think there is a part of me that hopes one day I’ll wake up and be pain and symptom free. Not just for a day, though. I’ll wake up and the world will feel different because I won’t be sick anymore.

I get scared because there are days when I’m so down that I think I might just throw in the towel. Because if this is how I feel now, how am I going to be able to deal with this forever?

Anger is a funny thing. It is a dark beast that hides in the pit of my stomach and rears its ugly head at unexpected times, and in unexpected places. It is like lava rising up in a volcano and it relentlessly destroys everything in its path. It is especially dangerous when it is directed at nothing and no one in particular.

I do desire to be happy, I truly do. But right now I’ve hit a wall, and I’ve dug myself into a hole that’s too deep to get myself out of on my own. In some ways, I feel like no one is listening, like I’m trapped in a glass box that’s filling up with smoke, and I’m pounding on the walls, but no one hears.

Because the truth is, if I wasn’t having a hard time facing the reality of my illnesses, I would never consider not taking my medication, I would never have skipped out on my quarterly blood work to make sure the Cellcept isn’t killing me, and I would never even give thought to how many times I’ve stared down my medication bottles, thinking how easy it would be to swallow them all down and never have to deal with any of this ever again…

I’m trying to stop the cycle of self-blame and self-loathing. I’m trying to remind myself that we do not choose our illnesses, rather, our illnesses choose us. And I’d like to think that somewhere there exists a reason for all of this. But I’m tired of fighting with myself, with my body, and with everyone around me. I’m scared that no one’s ever going to love me, really love me, illnesses and all. But most of all, I’m scared that I’m never going to feel whole again…


  1. Happy anniversary to your blog! It's been quite refreshing to have found this from the Grand Rounds carousel, and I believe discovering incisive and sincere viewpoints is part of its value. Yours is a thoughtful meditation on self-becoming, both in light of and in spite of your bout with some pretty difficult autoimmune diseases. I won't presume to know anything about what it means to persistently overcome and be overcomed by them, but you surely exhibit a courage and determination that I would want to emulate if I had to encounter similar circumstances. My worldview is partly shaped by the existence of a divine purpose, but I would never believe that disease and illness is something that goes along with that--rather, they descend from a despicable but amoral roll of the dice. I don't think there is meant to be a purpose for it all, but I do think people prefer to ascribe some purpose for reasons they find sobering yet empowering. I believe you've come a very long way and hope to see that continue :o). Thanks again for sharing your thoughts, insights and reflections, and I appreciate being invited in the online audience that listens in support and encourages you along the way.

  2. I am sitting here trying to think of an adequate comment and can't. Powerful...That describes this blog. As a fellow human being living with chronic illness I can most certainly identify with your current state of being. You are an inspiration.

  3. As I came across your blog I was hoping I could share it with my 14 year old daughter who was recently diagnosed with autoimmune hepatitis. As I read, I could barely continue due to my own feelings of discomfort with the content and the very real emotions contained. After finishing it, especially the mention of cellcept and finishing a bottle of pills, I was pretty clear that this would not be something I would share with my little girl. Now that I sit here and ponder the well written essay, I realize there is nothing here that she herself has not already considered. Particularly the issues around being loved. Everyone goes through their stages of loss/grief etc. I have tried to convince myself that she may take better care of herself through her life now that she is saddled with this disease and all that goes with it. The fact is she never knew what it was like to feel "whole". But I know she will be loved - really loved. I have been a physician for 15 years and a cancer survivor for 6. There is real love out there for anyone and everyone who is willing and able to give it. As the cliche goes its the one thing that you get the more you give away.

  4. Thanks to all for the comments and e-mails I have received over the last few days as a result of this post. I'm dealing with a lot right now, but am confident that I'll get through it. I always do! Thanks again!

  5. A whole year of sharing your journey through your blog-- that alone is quite an accomplishment. Sharing it makes a difference for all of us living with chronic illness as it affirms our own journeys and our feelings.

    Thanks for sharing your reality. Denial with a capital D is a big part of living with illness--sometimes I think it's an awfully good coping mechanism even...then sometimes it trips us up. After a twenty year journey with chronic illness I have found that acceptance grows, as does peace with the changes and challenges living with chronic illness brings. But the growth is slow...sure but slow, it's hard to see in ourselves.

    Wholeness I believe is making the best soup you can out of the ingredients life gives ya. If we're ill and making soup (not giving up) that's enough to feel darn good about. It's obvious from reading your blog that you don't give up.

    There will be people who see the beauty, strength, determination and vulnerability in how you live with the challenges of your illness...and they will love you for it!

    Sincerely, Kerry

  6. Some people can cruise. Others dive. You're clearly a diver. You don't avoid truth - admitting denial is truth. I too am a diver. I can't do it, go through life, with a pain condition, without continually picking at the scabs and seeing what's underneath the underneath.

    Your relentless insight is what causes you some heartache, but it is also a ferocious strength.

    When I read your words, even the ones that allude to wishing for an end, I don't hear succumbing. I hear desperation and determination.

    You are already loved - by your readers who keep coming back to join in your story. And there will be others who are drawn to your inimitable essence.

    And, you are a writer.

  7. Thanks Kerry and Barbara for your kind words of encouragement! Always appreciated!

  8. I just came back to reread this, Leslie, and to leave my own word of thanks. It is an especially odd situation, being young, in grad school, and suddenly having a chronic illness. It always makes me feel better to know that there is at least one other person out there who shares my experience.

  9. Oh, sweetie, once again you are breaking my heart! It is SO unfair that someone your age, any age, has to deal with a crap illness. Your struggles are so familiar to me and so very normal.

    Accept limitations? I have to have minor surgery next week and a nurse called from the surgicenter to go over my medical history. If she had asked simply "How is your health?" I would have replied "Fine!" without a second thought.

    As she went over each of my 'conditions' I grew more and more horrified to think she was actually talking about me!

    By the time she got to "...and you have MS." I was shrunk into a humiliated ball.

    Ah, good old denial. It is my middle name.

    You are right, you didn't choose your illness, but I don't believe it chose you either. I think it is just one of those fucked up things in life. But I look at the wisdom you share about your challenges and I think about all the people who read it and will take some comfort from what you have written. Despite what you are dealing with, you are doing such good.

    You will find someone to love you, genuinely love your wit and brains and beauty.

  10. I'm glad you related to this post, hydropsyche. Thanks for reading!

  11. Thanks Marie, for your words of encouragement. Your comment really spoke to me, as if you were talking to me in person.