A lot of what you deal with, with chronic illness is all centered around how to maintain a normal life whilst being sick at the same time.  Many of my posts highlight what we have to do to portray this normal life to family, friends and others around us.  Actually keeping up with this life is a balancing act on a very thin line.  So how do we do it?  What do we sacrifice?  Is a balance even possible?

Many places in the business world like to talk about providing employees with work life balance.  This balance indicates a certain level give and take the company will allow when dealing with personal issues, health issues, etc.  Finding a company that truly invests in this thought of a balance between work and life is rare.  Maybe it doesn’t even exist.  Even then, the companies that claim to provide this balance have a threshold of the lengths they will go to meet an employees needs.  Just as an employee has a threshold of shit they will do to meet their companies needs.   I have experienced this time and time again in every company I have worked for.  I will start out thinking how amazing the place is that I am working. They don’t give me a hard time when I need to be out of the office for doctors appointments. They allow me to work from home when I am not well. They are helpful when I am in the hospital. It’s wonderful. I think to myself, “I am so lucky to work for such a great place!”  The result is that I work as hard as I can to repay the leniency I am allowed.  It’s a nice idea… but after a while the honeymoon phase wears off.  People I work with start to lose their patience with the frequency that I am out of the office (mind you if any extra time is required it is unpaid leave).  I think people forget that I have to go unpaid while sick very often as I am only allowed a certain amount of paid leave. Which is fine. I accept this. At least they give me the time off and the ability to keep my job.  Those I work with, either way, notice the amount of time I am out. They don’t focus on the overtime I put in to make up for what I can. It’s just habit to focus on the negative. With that, my performance starts to be criticized.  I do not have as much face to face time.  I am not producing at a rate up to my peers.  I am not absorbing knowledge and detail as quickly. And maybe at times I am not.  Not maybe, at times I am not.  It’s a difficult balance. Maintaining a quality of that of my peers is just not always feasible no matter what I do. The perception of those around me doesn’t help when it comes time to review my performance and accomplishments at the end of the year. Since the focus becomes one sided it hurts me in the long run. It’s a reality that has been very difficult for me to grasp. With this reality, for those of us that work full time or even part time, with our disease we begin to realize we have to properly manage our goals and the time frame we will be able to reach these goals.  We will not move up the ladder at the same rate of our healthy peers, even if we produce the same results. At some point our work will suffer and that is what leadership will focus on.

In the back of our minds we know when we are not doing as well right?  We know that at a particular moment the balance is off. The work and the illness are just not aligned. The illness has taken over, and has hindered our ability to do our best. It has clouded our ability to mentally be our sharpest. I have days, even weeks, where I just can’t remember things like I usually do. It can be the disease or it can be the meds.  We have to face the fact that working with a chronic illness will never be an experience where we can be the best all the time and be seen as an equal.  Like I said, it’s tough to take in, but it is our reality.  To my ladies in the chronic illness world this is even more difficult for us. We are already at a disadvantage, especially if you’re a mom or are planning to be one.  Whether we want to believe being a woman in the working world immediately puts you behind the curve or not. It’s a fact, it does. It’s not all necessarily bad.  It’s all a matter of how we choose to accept what our perception of success is, and will be.  Maybe our concern is not with being successful at work, maybe it is with being a parent.  Regardless of where our focus of success is, there is still a balance we have to manage with our disease.

Interestingly enough I started drafting this blog a few days ago and coincidentally came across the TED hour on NPR today and they specifically addressed the idea of success and within that talked about the idea of work – life balance. This works perfectly for my blog this week! Yay!  In this series they mention that it’s just not possible to be successful at everything. We all know this, but the American way of life doesn’t. They state in the several talks mentioned that there’s no such thing as work life balance. Period. People that make it to be executive level do not have a family life.  Maybe this can be argued in very rare cases but for the most part I agree.  The idea of a balance and having success in all aspects of life is a fallacy. I want to mention this TED talk because it compliments my point exactly with a balance of work and chronic illness. This is why I stated we have to be realistic when if comes to our goals in the work life. It’s all a matter of one priority tipping the scale further in one direction than the others. When it comes to chronic illness, the illness will always be the heaviest weight on our scale. Yes of course we like to think we can manage it and that we will control it and never let it take over our lives. But can this actually be? No. Not really.   The circus music starts playing in the back of our heads and we realize we have to adjust.  We aren’t just balancing two things but too many things and reality has set in.  We are hit with another episode that knocks us on our assess when we least expect it…  What we can do is manage it.  This is how we hold our balance.  We may get a bit wobbly though!  Watch out!

Does this make us a failure?  Or as stated in the TED talk, a loser? No. Maybe “unfortunate”. But not a loser. We have lost. Sure. We have lost a piece of our soul, of our functionality of pretty much every little thing in our lives.  We have lost the full potential of what we could accomplish as a healthy person. But we manage… we identify our idea of success and we go with what is important to us. We set our goals realistically, prioritize and move at a pace that works for us. Because we know if we attempt to move at a pace of the healthy, it will burn us out so quickly, and set us back even further.  This goes back to a previous post of mine highlighting knowing our limits. Physically we cannot keep up. But that’s ok!  It’s our reality, and we focus on the positive right?  At least we can move forward!  At least there’s a light. If not at the end of the tunnel, maybe poking through little parts of the tunnel.  Seems more like our kind of light, for the chronically ill right? :o)

On that note, one thing I find myself saying frequently, and I think it’s time to stop, is that we work twice as hard and receive half the reward. Dark… I know. Goes against the positive thinking I keep saying we need to have. And maybe it’s true. Wait no it is true. It’s absolutely true. So who cares? Why work twice as hard and over do it when we know what I have said above will be the journey for us. Well. The answer is up to you. Where do you want to go? What do you want to achieve?  How can you get there?  What will it take from you?  Can you get there without increasing the risk of the disease?  What will you have to eliminate or sacrifice to get there?  What will you balance and how will you balance it all?  Start with these questions. Figure out how it all will work for you. Find your balance and always  be prepared for that scale to tip because for us it will… more often than not. Life is already a balancing act without a chronic illness. Chronic illness is just an extra weight on our back we have to shift around with everything else in order to not let ourselves fall off the beam.

– Just a Regular Sick Girl

*Check out NPR’s “The Ted Radio Hour” with Guy Raz. I love Guy Raz!*

http://www.npr.org/programs/ted-radio-hour/?showDate=2015-02-27