What if I could ask you only one thing?

I’m a good person, and I work hard to be caring and compassionate. Every once in awhile, though, advocating for myself takes on a different form.

Once, in 2010, I had been out of the house for a doctor’s appointment, and my mom had taken me to a restaurant to meet some family friends. I headed into the restroom, where there was a woman replacing some of the paper towel rolls. I headed into the handicap stall, because I had incisions all over my leg, and the handicap stalls have taller toilets (ergo, less pulling on already tender staples). I also had a WoundVac attached to my lower leg, so I needed to be able to manage that. While I was in the bathroom, an older woman entered the restroom and, upon seeing the handicapped stall occupied, made a comment about how restrooms really needed more than one of those. The employee made a comment along the lines of, “Well, we wouldn’t if people who didn’t need them stopped being so lazy.” In all my Prednisone energy, I left the stall and pulled up my pant leg so that both the employee and the elderly woman could see my WoundVac (the fasciotomy was covered by it), washed my hands, and left. I’m sure they muttered something, but I don’t remember what it was. 

People can be so critical of what they don’t understand, and that can be hard for others to explain things, when they themselves are suddenly thrust into a situation that they never imagined. I work in a field where I am constantly interacting with people, and I have learned how to field a lot of different questions.

— Category 1: “How are you feeling?” For this question, we need a flowchart. IF the request has been made sincerely and not as a result of good manners, be honest, but filter. It also helps to give the person something they can do to help (something small, along the lines of “I’m trying to brainstorm new smoothie recipes”); it makes the people who are sincerely asking (usually family or close friends) feel less sad and more like they can be involved. IF the person is asking as a courtesy, give them the generic, “I’m doing okay. My doctors are taking good care of me!”. I’ve learned that those people are not the ones to vent to, otherwise you’ll get stories of their mother’s neighbor’s cousin who has eczema on their right knee.

— Category 2: “Aren’t you hot? Why do you wear jeans or slacks all of the time?” I choose to cover my scars, because they can be a lot for people to take in. Others’ rebuttal usually is similar to, “I had mole biopsied on my back, but I still wear a bathing suit.” When I hear this, I always bristle and end the conversation quickly with a “I’ll think about it”, otherwise I’ll say too much.

— Category 3: “It looks like your moon face might be getting worse.” Yes, one of my extended family members actually said that to me. She was trying to be helpful and convey concern, and it came out more harsh than she intended. Somehow, between the surgeries, and the doctor’s appointments, and the medications, my personal life became everyone else’s business. I’m all for being healthy, and have been focusing hard on getting my body back in the past months, but 4 years of Prednisone takes its toll. When people make comments about my weight or my physical appearance, it hurts. It may be a side effect of my illness, medications, and the mental strain I’m under, but it’s not everyone’s business. These kinds of questions are completely out of line, and I always terminate the conversation with a “I’m managing everything to the best of my ability.” Luckily, I don’t have stretch marks from the weight anywhere except my inner thighs (they’re actually on the scars), so I don’t have to field questions about how I got those. 

In general, I’ve learned that the best way to handle intrusive questions is education and advocacy. Educate those around you about your illness and what your daily life is like, and advocate for yourself when misconceptions arise. Your family and friends want to help, they just need to know how to bring it up.


3 thoughts on “What if I could ask you only one thing?

  1. I really enjoyed this post! I totally relate. At EVERY family gathering, my mom makes a point to bring up my heath. It never fails, I look into the kitchen, and Mom’s surrounded by family talking in hushed voices and sending pitiful glances toward me from across the room. I’ve lectured her before, but the only way to stop this is to launch myself into the cluster with a funny comment and a stellar comment change- just to remind everyone that I’m a whole person, not a disease, and most definitely not on my deathbed.

    It’s tough, I know my family wants to be informed, and I’m not exactly forthcoming, but I hate winding up in a situation like the ones you referred to : “their mother’s neighbor’s cousin who has eczema on their right knee.” So true! The one thing I’ve learned through the “Behcet’s Experience” is that balance in every part of my life is so important, but also in conversation! Thanks for sharing! I’ll definitely keep your categorical advice in mind!

  2. When I first started taking Prednisone, I had bigger squirrel cheeks full nuts than usual. I saw a friend I hadn’t seen for awhile and she put her hands on my cheeks and asked “What happened?’. At the time it also put my appetite in overdrive and within 2 months I had gained 35 pounds. I didn’t realize it was the Pred.

    How about the people who come and tell you about the latest craze for Rheumatoid Arthritis (what I deal with) and assume it is the answer; that I need to right out and buy it. I know they are trying to be helpful, but it doesn’t help.

    • I definitely know what you mean about “snake oil” treatments! My family knows that I only do data-driven treatments, but other friends will suggest them sometimes, or I’ll receive email forwards from friends of friends. I just try to be very polite (because I do know that it’s all coming from a good place) and educate those around me to avoid future issues! Thanks for the encouragement!

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