When Judgey Judgers Judge
While talking with some loved ones regarding how Lupus has changed my world and how I am adjusting, the question of "What are your biggest challenges?" came up. I went through the normal list of things, the balancing act, trying to work, self care, medications, etc. You might know that story by now. But one of the things that I did mention got wide eyed astonishment. It's when judgey judgers judge. It's the judgment of others who know nothing about Lupus but seem to have an opinion about what I do to, or don't do to take care of myself. I guess it's one of the things that bothers me, A LOT, about having Lupus. I tend to tell people about my disease, because I feel if more people know about it, the more it will be less of a "thing", but I try not to dwell on it unless people genuinely ask for information.
The judgment is weird though. For example, I might meet some new friends at a winery for a glass of wine. It's a great opportunity to learn about each other and get to know these new friends. Well, they want to sit outside on the patio. I voice my preference to sit inside, I'm out voted, we sit outside on the patio. I dive for the shady spot and keep scooting my chair around to keep in the shade throughout the visit. Here come the "arched eyebrows" and the "eye rolls". I might apologize and say "Sorry, I have to stay out of the sun, I have Lupus" but they most likely don't know what that means. I can see the retreat in their eyes. Often, I don't get invited next time. The attitude that I am "high maintenance" or "attending seeking" is common.
I also feel the judgment when I have to dress to be out in the sun or in extreme temperatures (either hot or cold). Wearing a big hat, long sleeves, and long pants when it is a hot sunny day, makes a gal stand out. People ask, "Aren't you hot?". Yep, yep I am. If I bring a parasol to a public function, people think it's some kind of fashion statement. I'm just trying to keep doing the things I love without getting sick.
Sometimes people are convinced that, my Doctors and I are choosing the poison of medication over some herbal remedy they read about on the inter-webs. I have actually tried several herbal remedies. They didn't work. Lupus is much bigger than that. I believe that finding my equilibrium with my health has taken several years, several doctors, several big life changes, a lot of hard work, and a very precise application of medication. It's taken a lot to get to this place. Now that I'm living at about a 80 to 90% of normal, I'm not going to mess this up.
The worst judgment comes from those in the medical field, whose job it is to take care of me. I spend a lot of time going to appointments and getting tests regularly to keep a handle on my health. I have to take medications regularly. I have pain and other symptoms that crop up often. The judgement from the nurse, or Urgent Care Doctor, or pharmacy assistant, sometimes makes me feel like a criminal. Many times they think I'm a drug seeker, even though I am not crazy about taking new medications. One of my symptoms is that I don't react well to medications and I tend to avoid starting anything new. When I do have to take something new, I start with a half dose to be sure I don't get into trouble. But, I hear their leading questions, and I see them judging me.
The thing is, we have all had those moments where we have judged others for their needs or necessary accommodation because it caused us a slight inconvenience or a change in our expectations or plans. Whether it's a disability, an illness, a food allergy, a diet regimen, or addiction recovery, I don't want to be that judgey judger who judges.
So, I'm learning.
So, I'm learning.
