Addressing Stares from Others

I understand that it is uncommon to see a young adult wearing supplemental oxygen and using a wheelchair due to fatigue. It might spark a passerby’s curiosity about what has made this young person’s lungs so sick that they can’t breathe efficiently. I understand curiosity, but as the young adult in this scenario, sometimes it is hard to cope with the stares.

Recently, I was privileged to spend time on Canada’s east coast with friends who were unconcerned about my medical needs. One friend is a nurse, and we put together a plan of care to ensure I was safe and comfortable. This meant getting a wheelchair for longer sightseeing excursions since I could tire out quickly. It also meant wearing my mask in public places to avoid respiratory illnesses. While both of these precautions were important to ensuring a safe vacation, they also caused many people to stare at us.

At the end of my trip, at the airport, I used both my mask and a wheelchair due to fatigue. My friend specifically asked me if people’s staring bothered me. I said no because I don’t notice staring as often as I once did. However, once she emphasized how many people were staring at me, I did feel bothered and could tell she was bothered as well. Sometimes I wonder if people were taught that staring is rude.

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How I respond to those stares is usually dependent on my mood. Following are different plans I consider when thinking about how best to respond to people staring at me:

• Catch their eye and smile: I wish that asking about others’ chronic illnesses wasn’t taboo. I have had so many people sheepishly hint at wanting to know why I use supplemental oxygen. I’d prefer they directly ask than just stare. Most of the time I am completely open to talking about my illness, as it gives me an opportunity to educate others about idiopathic pulmonary fibrosis (IPF). Only occasionally do I not want to speak about it — my body language usually indicates those times. When I notice people staring, I intentionally catch their eye and smile, which sometimes strikes up a conversation. Other times, it doesn’t. Either way, I do want people to know that I notice their staring.
• Create an opportunity to educate: Sometimes I nicely remind people that it isn’t polite to stare and neither is letting your child do so. Other times, if conversations do start, I educate people on life as a young adult with a fatal lung disease. I don’t do this to evoke pity. In fact, it is just the opposite. I want people to sign up to be an organ donor to save people like me. I want them to think about persistent shortness of breath or dry cough symptoms they might have rather than chalk it up to something common. Creating opportunities to talk to others about IPF is important to me, even when it is created because others stare at me.
• Choose to ignore it: This is my tactic when I am not in the mood to talk to others or if I find myself bothered by stares. Sometimes this is difficult to do because if you aren’t used to people staring, it can be really tough to ignore. This was the experience that my friends had with me last week while traveling. Usually trying to ignore others staring bothers me more than addressing the stares because it doesn’t give the other person the opportunity to be aware of their actions and change them the next time. 

I realize that seeing a young adult using a wheelchair and supplemental oxygen is uncommon, and so I try to find some compassion for others who stare purely out of curiosity. That said, it is impactful for me and can make me feel pretty uncomfortable.

Do many people stare at you while using supplemental oxygen? Continue this discussion in our PF forums.

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