Why I Stopped Expecting People to “Get It”

You can call it what you want, but people will tend react similarly regardless. Chronic pain, invisible illness, a syndrome, malaise, etc. These are all terms that tend to garner little empathy from the general population and for whatever reason, carry connotations of softness, tolerability, and something that can be handled bravely and successfully by choice or succumbed to with weakness and lack of stoicism that the onlookers fancy themselves to have presented with similar circumstances. At least this has been my experience from most, even the well-intentioned.

There are some, the few, the ones who possess and practice true empathy, who will step into your shoes and ask pointed questions and make an effort to know the depths of your suffering, even if they cannot fix it or solve it. Those people understand that sometimes it’s enough to simply understand, to listen, and to be with someone so they can be heard.

Therein lies both the curse of loss and the gift of finding true friendship and unconditional love when sinking into a chronic illness. It is simultaneously painful and sad, as well as profound and discerning. It is dark and hopeless, and yet, light finds its way in, its rarity now making it more precious. I learned to appreciate more and expect less over time.

My husband has Muscular Dystrophy. He was born with it. He is slowly becoming paralyzed as he gets older. It is hellacious. No one ever questions the tragedy of this. No one ever blames him for inheriting the genetics that caused this sinister destiny. My own family is “inspired” by his existence, his attitude, and his ability to live the fullest life he can. He doesn’t complain. He does what he can for himself. He accepts every setback with grace.

Everyone I know with cancer immediately gets sympathy. Cancer is typically a tragedy in the eyes of most people. Mention cancer and people start sending flowers and bringing over casseroles and starting Go Fund Me pages.

But, have a chronic illness, or chronic pain, and something quite different takes place. Folks will ask how you are, genuinely. And they will be concerned at first. But they fatigue quickly. After a few check-ins, if I don’t have answers, improvement, or some sign that this topic will reach closure, they will tune it out. Some will observe me as a hypochondriac. Some will tell me to focus on something positive, or come right out and say, “don’t you have anything GOOD to talk about?” Others still will blame me for my disease.

I am overweight. I always have been. Since my diagnosis, my inflammation has been insanely high and my weight has really taken off. My joint pain causes me to waddle. I get why people look at me and observe that if I lost weight, I’d be better off, but this is not lost on me, and I am ALWAYS actively trying. The cutting remarks leave me feeling further injured.

Being in pain all the time is like trying to recover from a car accident that keeps happening every day. I make some progress and then I am horrible again. I can’t think. I am sensitive, physically AND emotionally. I have to really stretch myself to reprocess almost everything that anyone says to me. My initial reactions are defensive. I have to stop, dig deep, find empathy, and sometimes not even respond at all.

Ultimately, over the last few years, I have learned this lesson: you cannot change people. You cannot help how people think about the world (or you). All you can do is take care of you and the people who show you love. Try to forgive those who are making mistakes. If people (family or otherwise) are causing you more grief and pain than they are supporting you and loving you, create unapologetic boundaries.

Expectations of how others should treat me based on how I would treat them have caused me so much pain in the past. Letting go of those expectations is one of the best things I could ever have learned, or offer to someone else. Treat people as they have earned to be treated by you. Lean like a flower toward the sun into the love that is around you. Create your own family of support, no matter how small. Never stop trying to be a good friend and someone that people want to be around in your best moments and when you can. This is what loving and “getting it” is about.