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  • Politely Informing Others of Your Needs with Pulmonary Fibrosis

    Posted by Charlene Marshall on May 30, 2018 at 9:04 am

    While living with a life-threatening lung disease such as pulmonary fibrosis (PF), it is important to protect your lungs from known environmental toxins and viruses. Exposure to these things can be detrimental to our health, further damaging our lungs and putting our lung function in jeopardy.

    For me, inhaling secondhand smoke puts me in danger very quickly, as I begin coughing and often cannot stop which causes my oxygen levels to rapidly drop. Unfortunately, this has happened a couple of times, ending in an ambulance ride to the closest Emergency Department.

    When I am out running errands, I often have a few different visuals that will indicate to others that I have a lung disease. One of those visuals is when I am wearing my supplemental oxygen, and lugging around my portable concentrator or my tanks. Another visual is that oftentimes when I am in public places, I am wearing a special mask (Vogmask). Both of these visuals cause people to stare and perhaps wonder what illness I am dealing with. What these visuals don’t seem to help people understand, is that sometimes I need them to adjust what they’re doing in order for me to remain safe. More specifically, if I am standing in the exit/entrance area of a store with my mask or oxygen on, and someone is smoking; I need them to move away from me and the doorway.

    I often struggle with this, and how to best inform people of my needs while living with PF. Sometimes when I am out with my dog, people will want to stop and play with her which I don’t mind usually. However, on more than one occasion I’ve had to decline someone petting my dog due to them having a lit cigarette in their hands. This makes me feel incredibly awkward, but I need to avoid secondhand smoke at all costs.

    How do you politely inform others of your needs while living with PF? 

    This is also applicable when someone has a cold or flu virus. I am getting better at explaining that my immune system is compromised, and I need to avoid illness. However, I also need to ask for some accountability on others (ie. friends, family members and colleagues) to inform me that they might be sick so I can stay away.

    I find this hard, and I’d love to hear from others’ on how they manage this while living with PF.
    Thanks in advance!
    Charlene.

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