Coughing Fits Complicate My Game of Hide-and-Seek

Coughing Fits Complicate My Game of Hide-and-Seek

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. 

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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.

4 comments

  1. Lynn Mayberry says:

    You are not alone in your coughing/breathlessness experience. Ironically, losing my voice from breathlessness and unexpected coughing for almost a year and a half caused me more embarrassment and emotional upheaval than many of my other Lupus symptoms. Yes, there were many times when people looked at me as though I were a leper. I too, like to live my life without my Lupus being apparent–sometimes that isn’t possible. However, I no longer feel the need to either cover up my illness nor justify my physical and emotional well being. For the first time in over two decades of living with Lupus, I am experiencing the judgment of my choices to receive medical treatment, i.e., Benlysta. The judges are people who have known me for years but never bothered to understand Lupus. I am stronger for my choices and more centered in my determination. Realizing who has your back is very freeing. The ones that don’t … don’t matter.

    • Kellie McRae says:

      Hi Lynn, That last line you typed is what I am coming to realize. People who don’t know us or have our backs don’t really matter. I just took a trip to the US and on the plane, I was sitting next to a woman reading a book. Every time I would cough, I could physically see her book move away from me. I resisted the urge to tell her that I’m not contagious as I reminded myself that she could actually do me more harm than I could do her. I kept my words to myself. We are so conditioned to want approval or to fit in that when we don’t, it becomes a different level of “unhealthy” for us. I am definitely growing stronger like you in my determination to live a life where those that don’t take the time to learn about my battle, don’t matter. I wish you all the best and thank you for sharing your story. We are going to be just fine, we learn as we go and hopefully what we learn can help others coming behind us that deal with these feelings as well.

  2. Dorothy says:

    I love this article it tells exactly how I feel as well. Thanks for sharing and the above comments were much needed and so true. Blessings

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