Addressing Stares from Others

Addressing Stares from Others

younger than 30

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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Note: Pulmonary Fibrosis News 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 Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

9 comments

  1. Pamela says:

    My grandson is 9 years old and has pulmonary fibrosis and relies on oxygen 24 hours a day for the past 4 months. While some people stare…..especially children, everyone is super sympathetic and people make a huge fuss of him, he has even been given free gifts while we are out shopping!!

    • Charlene Marshall says:

      Hi Pamela,
      Thank you so much for reading my columns and for sharing this story, it brought a smile to my face. I am glad that your grandson receives special treatment as opposed to the experience of other kids starring or poking fun at him. This warmed my heart, he certainly deserves the ‘fuss’ over him. So sorry to hear he is dealing with PF at the young age of 9 but so glad everyone is sympathetic towards him. Thank you for sharing his story! 🙂
      Charlene.

  2. Ron says:

    Charlene
    My wife was diagnosed with ild on April 24 2018
    She is going through the transplant assessment process right now.
    We look forward to your column . We don’t feel so alone in this thanks to you . What you are doing is important to lots of people. Keep up the great work and thanks for sharing 🤗

    • Charlene Marshall says:

      Hi Ron,

      Thank you for reading my columns and for connecting via the comments. I love hearing from others, although I am sorry it is this cruel disease that links us all. Wishing you and your wife the best of luck with the transplant assessment. I know it is a long process, sending you both strength and love as you endure it and praying for a positive evaluation for her. I’m so, so glad to hear you like my column and that you don’t feel alone as a result of my writing. It is such a gift to me as well to be able to share my experiences and hopefully impact others. Thank you for the kind words, I really needed to hear them today 🙂
      Warmest regards, and please feel free to write any time! If you or your wife would find it beneficial, the PF forums are filled with wonderful and supportive people as well. You can join here if interested: https://pulmonaryfibrosisnews.com/forums/

      Take care,
      Charlene.

      • William smith says:

        I have just been diagnosed a few weeks ago but have been ill since 2016 just now feeling numb and can’t get to grips why iam only 52 I have been offered a disabled house yesterday and don’t have a clue how I will manage as iam on oxagen 24/7 and although I have been assured things will be fine I worrie wondering if anyone else would feel the same

        • Charlene Marshall says:

          Hi William,

          Thank you so much for reading my column and for reaching out via the comments. I’m really sorry to hear of your recent PF diagnosis. The weeks and months following a diagnosis like this are filled with anger, confusion and sadness so I do hope that you’re being gentle with yourself in your thoughts. I also couldn’t understand why I was diagnosed with IPF so young, especially when I never smoked and always was healthy growing up. The thing is, while the literature outlines a poor prognosis for us all, I’ve interacted with people who have lived with this disease for many, many years even on oxygen. I am also on oxygen and while it took some adjustment (emotional and physical) I still can do a lot of the things I once loved, such as travelling. Do you have a good support system in place around you? Sometimes we need it more for the emotional coping than physical support, or that has been my experience anyways. If you’re interested, please feel free to join the PF forums at: https://pulmonaryfibrosisnews.com/forums/ … when you’re ready, this platform is filled with wonderfully supportive people and lots of helpful information. Hang in there, and please don’t hesitate to connect any time.
          Kind regards,
          Charlene.

  3. I have just been diagnosed a few weeks ago but have been ill since 2016 just now feeling numb and can’t get to grips why iam only 52 I have been offered a disabled house yesterday and don’t have a clue how I will manage as iam on oxagen 24/7 and although I have been assured things will be fine I worrie wondering if anyone else would feel the same

  4. Roger Wenschlag says:

    As a 77-year old with IPF I often get stares. Most come from middle aged women who stare for a moment and then give a knowing smile as if to say, “You poor dear.” I never got so many smiles when I was younger :). The other stares come from little children who have a look of wonderment on their faces as if thinking, “What’s that thing coming out of that man’s nose?” When appropriate I give the kid a smile and ask if he/she knows what the tube is for. Usually they don’t so I give them a 30-second explanation. That seems to satisfy them, and the parents are grateful for the respect you’ve shown their child.

    • Charlene Marshall says:

      Hi Roger,

      Thank you for reading my columns and for getting in touch with us via the comments. I love your approach to addressing stares others might give you while using oxygen! When the stares are coming from children, I completely agree that it is often appropriate to ask if they know what the tube is for and answer their questions. It is my hope that this gives them more empathy when meeting people in future who might be wearing oxygen. My nephew (who is 4) once came upto me and asked where my “hose” was when I wasn’t wearing my cannula and this made everyone laugh, so it certainly lightened the mood. It was a great moment! Thanks for sharing your experiences 🙂

      Charlene.

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