This is a true story that happened to me a couple of years ago:
I was in the kosher grocery store one day, picking up some food that I couldn't get at the regular grocery, and ran into a (now) acquaintance (another blog topic for another day) who asked me how I was doing and what I was doing “these days.”
When people ask that question, I think about answering it in three ways:
1. The whole truth and nothing but the truth.
2. Partial truth: as in answering truthfully, but leaving some pieces out. OR
3. Blanket, generic: I'm okay, things are fine.
With this person, I struggle each time with which answer to give, because I never know what her response is going to be on a given day. There are some people I can immediately decide on a given response. However, with this person specifically, there are personality issues going on, and I have to be prepared, sometimes even brace myself for her answer.
I decided to be brave, and give the whole truth, and nothing but the truth. I told her that overall I was doing well, and that I was planning a trip to visit a friend for an upcoming Jewish holiday. This person knew I wasn't working and on disability, knew I had fibromyalgia, and knew I spent a significant amount of time at home due to my high levels of pain. (This was early on in my diagnosis, and my pain, despite being on medication, had not been able to be properly managed yet.) Here is how our conversation went:
“It must be nice,” she said, raising her hands to the heavens and looking up.
“I'm sorry?” I said.
“It must be nice to have the freedom, money, and time to be able to pick up and travel whenever you'd like,” she responded.
Despite being aware of my diagnosis and the fact that I was on disability, it became crystal clear that this woman knew nothing of how I lived my days. I had worked very hard to get to where I was, and where I am now, but I still needed to depend on disability because I was unable to work. I need to depend on medications for my physical and mental health. I have a lot of positive gifts in my life. I have a roof over my head, caring friends and family, and enough money to meet my basic needs. But, she didn't know how I lived my life, or where I got my money for that trip. She didn't know that I took out money from my disability check that just met my needs, to save for this trip. She just assumed.
I don't get angry easily, but I felt the steam blowing out my ears. I took a few moments to collect myself, and responded, “Just as I don't judge you about how you make your life choices, I'd appreciate it if you wouldn't judge me. Living a life with chronic pain, an invisible illness no less, is no joke.” And, then I said the thing that I swore I would never say, the thing that those of us that live with the disorder often joke about. I said, “Walk in my shoes for 24 hours, and you will take back everything you said.”
Do I regret what I said? No.
Do I regret how I said it? Yes.
I'm not an angry and bitter person. There are nicer and more appropriate ways to educate people about what it's like to live with fibromyalgia or any other chronic disorder and/or invisible illness. Fibromyalgia is still a new word, a new disorder, a new world. It's OUR job to educate those around us. However, we have to do it in a way that our friends, family, co-workers, bosses, and the WORLD want to listen and learn. Otherwise, we are going to get pushed by the wayside, and continue to be thought of by many as: an “exclusionary diagnosis.”
Have you had a similar experience to this?
How did you handle it?
Was it something you regretted? If so, that's okay.
Was it a moment that you'd like to revisit? Obviously not; but, maybe you'd like to process it with someone who “gets it.” Because, there is always the possibility of a next time. As as Fibromyalgia Advisor, I can help you with this. Not at the top of your list? It doesn't have to be.
We must educate ourselves in order to educate others. If you ever encounter Mr/Ms. “It Must Be Nice,” let's make sure you have a kinder, possibly more powerful, and educated answer with which to provide them.
I can update you on the latest research and findings on what helps us feel better, function better, and DO better in society. As a Fibromyalgia Advisor, I have many resources and people that I would love to share with you. Reach out to me and let's get started today!
I’m Kate Straus and I’m a Certified Fibromyalgia Advisor. I help Jewish women feel confident in their ability to practice their faith while navigating the ups and downs of fibromyalgia. I’m using the disease that at one time knocked me down, to help support others live life to their fullest.