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Why It's Not My Job to Be Your 'Inspiration'

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It happened at a roadside truck stop — the kind of place with more than just a small shop, a few drinks and some snacks. It had a very nice bathroom set-up with showers — a place people only really pull over if they are on a road trip of some sort, or truckers making a stop while they work. I had begged for a stop in order to answer the endless demands of my bladder, which seems to always be in need of emptying these days. But honestly, my bladder is the least of my problems.

I was diagnosed with Dercum’s disease, a rare disease oftentimes under-diagnosed. If you google “most painful diseases” you will find at least one list in which Dercum’s is in the top three. I have been in pain for 18 years now. For most of those 18 years I have worked and lived as much like a healthy person as possible, and while I don’t have the stamina of a “normal” person, I do as much as I can to keep myself active and happy.

I also feel the weight of expectations on me. When a person has it difficult these days, society often feels the need to demand he or she overcome it. There is story after story found of people with disabilities to inspire us. These stories tell us it is possible to do the impossible. We can fight the odds and make something of our “shattered lives” if we just try hard enough. I believe these stories are placing impossible expectations on people with chronic illness, recovering from major injuries or born with serious disabilities.

Like so many people, I get most of my media by scrolling through Facebook. It is full of stories like “they thought he/she would never do this again…” or “everyone underestimated him/her, but really…” I see a minimum of one per day. I find myself both drawn and repelled by these stories. I also find myself feeling incredibly inadequate because of them.

Maybe if I just tried harder, maybe if I pushed a little more, maybe I could accomplish a little more, maybe I could be a little more valuable to the world and my community. Now, I don’t sit around doing nothing; after much trial and error, I have managed to find an acceptable if not high-paying work from home position. I work with an international youth group as a volunteer, and I am a mother, friend, daughter and sometimes romantic partner. I get out of the house, into the world and my community.

However, I cannot help but remember how I once worked four jobs simultaneously, went dancing in the evenings and walked for miles in the park in the afternoons. I remember not having to cancel at the last minute because there are days when I just cannot get it together and function outside of my home. I remember not worrying about what horror my body might present me with next. I still do a lot, but I am living with a painful and difficult disease. I live with much less in the way of life expectations, comfort and happiness than I had hoped to have by the age of 45.

On this day, I was on a road trip with my best friend. We went to meet her daughter part way to Maryland to bring her home from her grandparents’ house. I went along to be a companion, along with my oldest daughter. We have a little fun on these trips, laughing talking and  sometimes I read funny articles on the internet in a funny voice or with funny mannerisms in order to get a laugh. It puts me back in touch with the part of myself that always enjoyed performing.

We stopped, I went into the bathroom and she saw me. And then she told me what an “inspiration” I was. She had seen my difficulty in moving, my unusual size and shape and guessed something was just not “right” with my health. She told me how she thought I was “brave” for getting out of my home. She told me how her neighbor was my size, and also in pain and didn’t even bother trying anymore.

And in that moment, I failed her neighbor.

I should have taken a moment to educate her about how everyone with chronic pain has different limits and differing levels of ability to move and enjoy life. However, I did remember to take a moment and educate her about my disease, and how Dercum’s can cause weight gain. I told her how once I was a dancer and actress and how it all changed with the onset of the more severe symptoms of my illness. I let her know her neighbor sounded a lot like me and should not give up on finding a reason for her decline in health.

As Americans, I believe many of us have been taught to pull ourselves up by our bootstraps and persevere. We have been taught to push and endure, not to complain, and to carry on — to keep striving and reaching for the top. Many of us are told to not accept failure.

But when pain enters your life, grasps your hand and becomes your closest (though most unpleasant) companion, these expectations cease to be appropriate. 

So here it is, I am not trying to be anyone’s inspiration. I am not going to be the story you see on the Internet about rising above adversity. I just want to live my life as comfortably as possible, and I want the world to stop asking me to try to do and be more so they feel they can get past their own and perhaps more manageable life problems.

It is not my job, or that of my fellow warriors with chronic illness to help you work past your own malaise in your normal life, and it is not fair of you to place such expectations on us. Our greatest accomplishments some days is just “living through it.” While it may not seem like much, just making it through the day can be a greater achievement than winning an Olympic gold medal. Please stop looking for more.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 12, 2016
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