Many of us are frequently told, “You don’t look sick.” We can find that comment a little off-putting. While we recognize that it’s someone’s way of saying that we look “good” or “well,” that’s not how we feel about it.
Not looking sick allows us to remain camouflaged among those who are well. I prefer to keep my state of constant pain to myself. I experience some level of pain every day, but I rarely share that fact, even with those around me. I talk about it only when my pain is heightened. When my symptoms show up in a way that I cannot hide, I feel embarrassed. I remind myself that I don’t owe anyone an explanation of what is happening to my body. Yet, sometimes I offer up one anyway.
I don’t own a car; my primary mode of transport is sharing an Uber with strangers. I wrote in a previous column that since the beginning of the year, I’ve had coughing fits because of my lung condition. I sound like a three-pack-a-day smoker even though I’ve never smoked cigarettes. When these coughing attacks begin I have no control over them. Sometimes merely taking an inhalation before speaking can bring one on. (I hadn’t realized how much effort goes into speaking until my lungs rebelled.) For some strange reason, some Uber drivers think that I’m coughing because of the air-conditioning and they will turn it down or off to try to make me comfortable. Then, because I live near the surface of the sun, their good intentions cause me to become too hot.
I recently went out with some friends to a place where the noise levels gradually increased during the night, which meant we had to raise our voices. By the time the evening was over, I was worn out from the extra effort of speaking and was having a hard time breathing. To top it off, my breathlessness triggered a fit of coughing. In case you haven’t had such a pleasant experience, another consequence of excessive coughing is a runny nose.
We decided to share an Uber home, and I was to be the last one dropped off. As the driver traveled to our first stop, he drove at a reasonable pace. When I was alone in the car, he started speeding. I guessed that he was reacting to my cough and his thoughts were, “Whatever this lady has, I don’t want it. Let me get her out of the car as soon as possible.” After I’d alighted, I imagined him stopping to douse his car with Lysol.
Where I live, when you eat out, restaurant staff don’t bring you water unless you request it. So, when water shows up without my asking, when temperatures in cars are changed, when strangers inquire, “Are you OK?”, and when Uber drivers start speeding, it makes me want to go into hiding.
Many of us who battle chronic illnesses talk about the unpredictable nature of our disease. It’s hard to make plans, and sometimes when I can show up, I wish that I hadn’t. When I stay home, I’m not embarrassed and don’t feel the need to explain myself. While it’s less stressful to avoid social outings, the issue is that people need people, and we all want to have fun in our lives. So my latest challenges are dealing with wanting to hide, realizing that I don’t owe people an explanation, and overcoming feelings of embarrassment about something over which I have no control.
How do you handle these types of feelings? Please share in the comments below.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.
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