Living alongside an invisible complex chronic illness for 20+ years has changed me in a variety of ways. According to multiple trained mental health professionals over the years, what makes me different than a lot of people is how I take the pain and transform it. I let myself feel the pain, and then I use the pain and make it my purpose. Since I only know how I respond to my own life situations, there are quite a few instances where it is difficult for me to see how good of a job I do in this area. I am busy trying to keep myself alive while finding joy in the life I have, so I don’t regularly spend time thinking about how I respond differently than other people. However, I do regularly notice how judgmental people are about other people’s situations. A lot of people have a lot of opinions about how others are living their lives. I see it every single day . . . and, somehow, I am still surprised by it all. Because of everything I have been through in all stages of my life, I have a deep understanding of how much I don’t know about other people’s lives. As long as the choices other people make don’t hurt anyone else, I genuinely don’t give a shit how other people live their lives. It is amazing how much perspective one can get when they live through challenging life events.
When I tell our amazing therapist how surprised I still am by other people’s unsolicited opinions, advice, and judgment, she reminds me that I have a uniquely wide lens through which I see the world. The people who have not experienced much in life, or have not learned from the experiences they have had, tend to view the world through a very narrow lens. She reminds me that since I have been through a lot over the course of my life and have chosen to expand my lens with each life event, my lens has grown exponentially. I will probably never understand why other people react and respond to my health situation in the ways that they do, because I know that I would not react or respond in the same ways. Part of my current purpose is to bring a little bit of a wider lens to others who have never experienced living alongside an invisible complex chronic illness.
Over the last week, there have been quite a few instances when a person with a narrow lens tried to speak to me about my life. One tiny example is from this morning. I had my 2nd iron infusion for this round of infusions this morning. The nurse who was doing my infusion this morning was the same nurse as last week, so she continued the conversation from last week. She was kind and helpful, and she was trying to engage in small talk. Over the course of our conversation from both last week and this week, she informed me that I was lucky that I don’t have kids. She said that her life is over now that she has kids. She said it in a way that made it known that she was being serious even though she was playing it off as a joke. Awkward. We moved on to discuss how my husband and I lost power last night during the storm, and that my husband went to buy bags of ice from a local convenience store at midnight to keep my food from going bad. The nurse then asked me about my wedding ring and the other ring I wear from my husband. I told her why I was given the second ring, and she said, “Oh, well, if I didn’t already know that you don’t have kids, it is obvious that you don’t have them because of the relationship between you and your husband.” She was implying that kids can bring about a level of stress and financial hardship [true] that I could not possibly understand [untrue], and that the only reason my husband and I still treat each other well is because we don’t have kids [untrue]. So, I responded with my wider lens and let her know that while we don’t have kids, we do have the stress and financial strain of living alongside 20+ years of an invisible complex chronic illness in which testing and treatment are both mostly not covered by insurance. And, in a split second, I saw her lens widen right before my eyes. She paused and thought about what it would be like to live my life, and she said, “Yeah, you are right. I didn’t think about it that way.”
Over the years, I have gotten good at letting other people’s ignorant opinions, advice, and/or judgment bounce right off of me.
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Their opinions are theirs, and to put it mildly, are usually uninformed.
However, I do still take the time to widen people’s perspectives when the situation allows for it. An important boundary I maintain in the process is that I won’t go back-and-forth with know-it-alls.
I don’t have the time or energy to engage with people who are unwilling to widen their perspective.
Brutal. People’s unsolicited opinions, advice, and/or judgment. People with a narrow lens. People who are unwilling to widen their perspective.
Beautiful. Turning pain into purpose. Taking the time to widen people’s perspectives when the situation allows for it. My amazing husband. Doing the work to maintain a great relationship with my husband despite the stress and financial strain associated with chronic illness.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 