Learn to manage your expectations.
It’s one of the first things your healthcare specialist says to you after receiving your diagnosis. While my neurologist never explicitly said it to me, it’s implied. Granted, they have high expectations for my wellness, often higher than I had for myself. But when I was in the hospital, pre-diagnosis, that was one of the first things the hospital neurologist said to me in response to my health concerns.
Whether it’s been said or not, it’s something we learn quickly with a chronic illness. We must manage our expectations because we have no choice.
For many of us, we have the following expectations in life: we’ll be healthy, achieve personally, and go far professionally. Often these expectations get scrapped in favor of coping with a chronic illness diagnosis. We might have pain to manage that prevents certain exercises. Our fatigue gets to be too much that we cannot do the same personal tasks we once did. Or our workplace can only accommodate our illness so much before we see colleagues surpassing us.
The expectations we once had slip away and we feel nothing but discouragement. But do we have to let those expectations go?
John Gary Bishop says in Unf*ck Yourself that we should “expect nothing, but accept everything.” It’s perhaps the healthier way to approach the “manage your expectations” conversation. We should scrap all the expectations we have for ourselves and accept whatever life sends our way with an open mind.
This refers to the positive and negative expectations we place upon ourselves.
Why We Set Expectations
In childhood, expectations are placed upon us and for us. Parents might expect us to take on a level of responsibility around the house, or they might share their desire to see us succeed when we become adults. We extrapolate this external expectation and internalize it for what we think we’re capable of doing. Expectations drive our dreams and our desire for achievements.
But rarely are limits placed on these expectations, and as a child, why should it be limited? We imagine being firefighters, doctors, and presidents as our career goals, not wanting to pick between the three. We expected to achieve anything, especially when told we can be whatever we want when we grow up.
Illness or not, we learn quickly that there are limits to our expectations. Not all of us will get into an Ivy League school. We will have to choose between a firefighter, doctor, and president for a career, if only to pick one to focus on at a time.
Life will not work out the way we expected. And then we get our diagnosis.
The Problem with Expectations
The obvious problem with expectations, at least at first, is that we are often unprepared for the letdown. When we don’t achieve the way we expected, it can feel like a failure. For some, that can lead us to shutdown and get stuck.
When we set expectations early in life and achieve them, it’s often viewed as a good thing. Rightly so, you set a path for yourself and achieved your goal. Rich Karlgaard writes about the problematic relationship Western culture has with early bloomers in his book Late Bloomers. Western culture is so hyper-obsessed with the Mark Zuckerbergs, Elizabeth Holmes, and Malala Yousafzais, that it overlooks those who quietly grind away to achieve their success later in life (30s and beyond).
Because there’s an intense expectation for early success, often when we leave high school or college without making some “30 under 30” list, there’s a feeling of panic. This can bring our personal expectations down, or cause us to stall out for a few years.
This is one problem with societal expectations: we misplace expectations on people who may not be emotionally mature to handle the pressure (for reference: Elizabeth Holmes, Martin Shkreli). When young people are pushed to succeed early, they forget that a window does not close as soon as they turn twenty-five. That window for success stays open their entire lives.
The second problem referenced in Karlgaard’s book is that early bloomers do not know how to handle failure in the same way late bloomers do. When you are a late bloomer, you get used to “failure;” you get used viewing it not as a failure but as a learning experience. Late bloomers are better equipped with managing their expectations.
Learning to Manage Expectations
In life, there are two sets of expectations: “positive” and “negative” ones. This is a false binary, but I am going to use it for clarity sake. Positive expectations are the goals we set for ourselves that we want to achieve. Negative expectations are the times we don’t believe we can achieve it.
At the time we receive our diagnosis, we might drop our positive expectations: career, family, personal goals; and replace them with negative expectations: lack of mobility, exacerbations, and limitations.
For example: before my diagnosis, I intended to become a University professor. After my diagnosis, I dragged my feet because I assumed I wouldn’t be able to handle the rigorous testing due to memory issues. I replaced a positive expectation, “career goals,” with a negative one, “my memory prevents me from achieving.”
If you are like me, a late-bloomer, hopefully you know how to handle disappointment and also view perceived failures as learning experiences. Transfer that awareness to how you view your illness: manage your expectations away from the negative reasoning of “I can’t do this,” to positive “why not try it anyway?”
Often after a diagnosis, we work our way through grieving for our health. It’s a healthy and necessary process, but sometimes we decide to get stuck on the negative thinking. It’s easy to look at all we think we can’t do, rather than focus on what we can do.
But you might surprise yourself if you take a moment to release the expectations you place on yourself. Yes, you may be struggling to walk or get out of bed today because you physically cannot do so, but does that mean you should indulge in the negative expectations of what you can’t do?
There was a time after my diagnosis where I didn’t think I could run or do anything active due to numbness and fatigue. I was in a negative expectation mindset. I actively decided to remove all expectations on myself and said, I can do something. It won’t look the same as a person without an autoimmune diagnosis, but it will be something.
The moment I removed all my expectations (negative and positive), I found I was able to achieve.
I actually found I went farther than before my diagnosis because I removed all expectations I placed upon myself and my abilities. Even when I was “healthy” I had numerous expectations that prevented me from achieving.
This is because when we manage our expectations by removing them, we remove the mental obstacles that prevent us from attempting in the first place. We go out and attempt to achieve without thinking about the limitations we might have. We may still stumble, but it isn’t a failure as much as it’s a learning experience.
If you were an early bloomer, this is your opportunity to bloom once again. Or, as it is in my case, my chance to bloom later in life.
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