Sunday, June 19, 2011

Ensuring A Future With Chronic Illness

So I don’t mean by the title of this post ensuring a future in which you end up chronically ill.  What I mean is, ensuring that despite chronic illness, you have a future.

For the past few years since I got sick, I have done a lot of soul searching.  Who I am?  Who is the person that I want to become?    What do I want to do with/in my life?  What are the important things that I want to focus on and give what little energy I have to?  These are just a few of the myriad questions I have asked myself.  And finding the answers hasn’t always been easy or clear cut.

But there was one thing that I did put my mind to.  That I am going to finish graduate school, regardless of what anyone says or does to make me think that I can’t.  But this comes with a pretty big caveat…      

I can’t give 110% anymore.  I can’t get seduced by the idea of it.  Because if I want to survive, if I want to have a future, I have to have balance.  I have to be able to distinguish between the various aspects of my life.  I can’t let one single identity become the only one that I can relate to. 

That person and that life don’t exist anymore.  They can’t.  They are not commensurate with being happy AND as healthy as possible.  The person that lived that life was a naïve college student who believed that the future was limitless, full of possibility, and more important, full of an infinite amount of time.  But for those of us who are chronically ill, time is a luxury we simply don’t have.  So if I seem to get hung up about how long it is going to take me to finish graduate school, how old I will be when I have my PhD, if and when I will get married and have children, it’s because time is elusive and fleeting.  And I know that because in some ways, I have been forced to think about my mortality in a way that other people my age haven’t. 

When I gave 110%, I had no life outside of school, not another single identity that mattered, and look where it got me.  Sick.  SICK.  So what was the purpose of working myself to the bone?  To ultimately learn that it wasn’t worth it?  That it took me getting sick to realize that there is more to life than how well you perform in school or how successful you are at work?  Honestly, for me, coming to this realization has made me feel like a weight has been lifted off of me.  Like I don’t have to live a lie for my entire life.      

One thing that I thought I had been successful at conveying, but recent conversations make me think that I haven’t, is that my graduate school career is not going to be typical, and that’s okay.  I am not the “normal” twenty-something who only has graduate school to worry about.  I have two full time jobs to contend with.  Because in order to be competitive in a rigorous academic environment like the one I currently find myself in, it will be at the expense of my health.  Because if I am going to be in that kind of environment, I am going to want to be competitive, but being competitive means putting career first and everything else second.  And if there’s one thing I’ve learned (the hard way) since getting sick, it’s that putting my health second to anything is only to my detriment.   

I have accepted my reality.  And now it’s time for others to do the same. 

If my head or my heart hasn’t seemed like it’s 110% in graduate school, it’s because it’s not.  And it can’t be.  My life has taken a series of turns over these past few years, and honestly, I’m amazed that I’m still standing, let alone trying to finish up in graduate school what I set out to do. 

But if graduate school means ignoring a part of my life that is a full time job in and of itself, well, then it’s pretty obvious to me what has to go. 

My actions, living my life the way I see fit, isn’t a dis to my committee or me thumbing my nose at the profession.  It’s me trying to ensure that I have a future.  And while that future might not take me on the “prescribed” routes based on the degree that I will have, it doesn’t mean that my future can’t be equally as bright.  But if I’m sick to the point of not functioning, or I’m dead, well, that means not really having a future at all.  And the responsibility for that will fall squarely on my shoulders.    

As much as I can control the future, I have to guard myself from the naysayers and the Debbie Downers.  I have to live my life the way I want to live it, on my terms.   I’m breaking with the past in order to guarantee my future.  And that means fighting to maintain balance, even though there are always things trying to tip the scales.


  1. You have earned the highest degree possible in the school of life...taking care of yourself both physically and emotionally. With chronic illness this isn't a side is our first job. Hats off to you for graduating top of the class with this realization!

    I had to laugh at the "Debbie downer". Mmmmm....deb murphy...geez can I say more :-)

  2. I just finished my doctorate. It took me longer than I thought it would. When I entered the program, I was still healthy - I got my diagnosis during the first year.

    At one point, I looked around at my fellow students, who were rushing around feeling panicked and pressured about everything. I realized that this wasn't going to work for me. So I slowed down. And what I discovered was unexpected. It actually WAS possible for me to finish the dissertation without making myself completely insane. Yes, it was hard work and yes, it took a long time, but I did not have to buy into the crazy that usually goes along with it. I'm not saying there was NO crazy - there were definitely periods of it, especially towards the very end - but there was much less than I ever thought was possible. I decided that I would work at a pace that didn't kill me, and it would get done when it got done. And it did get done, just slowly.

    I think your priorities are exactly right. I am lucky that I had a low-pressure advisor - I was the one who determined my own timetable. If this had not been the case, I probably would have dropped out. And you know what? That would have been okay too. There really is nothing more important than taking care of your health.

  3. I was directed here by Rheumatoid Warrior's bio of you. I'm so glad he posted about you today. I am new to the RA diagnosis, plus I'm old (60 yrs.), so I appreciate the honesty and sharing of people like you. Thank you. I am learning a lot.

  4. Good for you! Its important not to give up on ones dream despite their situation. You can still achieve your dreams you just have to be a little creative. Are there some classes you can take online.

  5. Deb - I definitely wasn't referring to you ;)

    Remicade Dream - I was diagnosed my first year, as well. I think that going to the same undergrad and being a star student, I set myself up really high, but then got sick.

    Jan - Glad you found me! Thanks for reading!

    Lana - You posted a great comment. I went to delete the other one, and accidentally deleted them both. I didn't mean to do this. If you have a chance, please comment again - and I promise I won't delete this time.

    Sistergirl - That wouldn't be an option here anyway, but I am done with classes and at the point of conducting my original research and writing my dissertation.

  6. I went back to university, then on to grad school when I was older than the traditional student. I had some chronic health issues (I have more now), and found I had to pace myself. There were times when researching and writing the dissertation seemed impossible; but I did it. And, you will too!
    It's about balance; you have all the right ideas. Your health has to come first; otherwise, reaching your goal could be more difficult. Wishing you all the best of luck on your journey through "dissertation land."

  7. I'm going to be graduating next month with a masters degree in geology, but to get to here I had to take a year out of my studies and finish my research project from home due to my health. Unfortunately my health has gone from bad to worse, so I'm having another year out to "re-condition" myself and learn to manage things better so that this time next year I can take up my PhD. Living at home for another year with my parents at the age of 23 is not really what I envisaged, but I'm publishing my research project to keep me going & I can do it at my own pace!

  8. And I promise I won’t make so many errors the first time and hit send too early. :-) I don’t remember what I said the first time but I can tell you that your goals might have to change, the timing and path as well, but you still can have dreams. When RA and Fibro came into my life, I did everything I could to keep things the way they were and I spent more time running into brick walls. Three years later, I have finally come to terms with the role that RA and Fibro play in my life. Know your limits and now that you still can have dreams. Yes, your goals have to change but your dreams don’t simply because you put your health first. So prioritize you. The people that truly love you, they will understand.

  9. I think that even if you didn't have your illness, rushing around life isn't the way to do it. I know this from personal experience.
    As for your health - it seems as a Type A personality - having limitations has been a challenge for you - BUT - may end up being the very thing that allows you to get your PHD and maybe remember doing it - rather than it all being a blur. Congrats on what you have acheived so far - it is more than most healthy people do let alone sick. You are a fighter! Be proud.