Educating Those Who Pass Judgment on Invisible Illnesses

Educating Those Who Pass Judgment on Invisible Illnesses

recharged and rewired,brittany foster

I have experienced what it’s like having a visible illness for two years. For 24 years, it was invisible. I find myself asking, is it more troubling to receive awkward glances, strange remarks, and have people think I am critically ill when I use oxygen? Or is it worse to have an invisible illness, so people assume I am fine when I am far from it? I thought about this a lot over the weekend, after an incident I had with a police officer as I was heading to a country concert.

On the way to the concert, I pulled into a handicapped spot in a parking lot to grab a coffee. A cop quickly approached us and tapped on the window. My placard was hanging on the mirror and he pointed to it, asking, “Who is handicapped here?” At that moment, I wished I had my oxygen in. An ignorant judgment was all it took for me to feel humiliated. I was reminded of just how much I, along with many others from the chronic illness and pulmonary hypertension community, struggle with people making assumptions based on appearances.

I showed him my oxygen as well as my pacemaker card, proving my disability. Afterward, he walked away, saying he “has a brother in a wheelchair, so seeing people walk out of a car after parking in handicapped makes him upset.” Although this made me feel sorry for his brother, there were many things wrong with what happened.

This is not the first time judgment has been passed on someone with an invisible illness and it certainly won’t be the last. We live in a society where people judge based on appearance alone. To break these misconceptions, especially as it relates to an invisible illness, it is important to educate.

Visible vs invisible. Same girl. Same illness.

This officer was passing judgment on those who can “walk out of their car.” He equated walking with being physically able. And he assumed that a person who can walk doesn’t need a handicapped pass as much as his relative who uses a wheelchair. This is a very superficial way of looking at a disability.

In a letter I wrote to the officer, I said: “When you looked in the car you saw two cheery, young, blond girls who were heading to a concert with our plaid shirts around our waist, t shirts and jean shorts. You saw my face with a tan and my eyes without dark circles. What you didn’t see was the makeup I had to put on my face to hide my pale complexion. You didn’t see the concealer I used under my eyes that hide the dark circles from lack of circulation in my body. You didn’t see the fact that I had a four-hour night sleep the night before because I was having burning under my ribs and a pulsing in my neck. You didn’t see the fact that I had to put my oxygen up to 3 liters just to be able to keep it off for a little while and feel ‘normal’ for once.

“You didn’t see the scars that cover my chest from open heart surgeries, a bypass surgery, a pacemaker implant, multiple heart caths and chest tube placements. You don’t see my blood pressure on the days when my readings are too low to even get out of bed. You didn’t see the five different pills I had to swallow that morning and pack with me in my bag to take later. You didn’t see the oxygen in the back seat until you so rudely made me get it for you to prove to you that I had it.”

This way of looking at disability MUST stop. It is our responsibility to speak up for ourselves, educate, and spread awareness. So many of us with PH have our own versions of what the outside world doesn’t always see. Just because we aren’t in wheelchairs, just because I didn’t have my oxygen in at that exact moment, just because we don’t all walk with assistive devices, it doesn’t mean we should be judged unfairly and have to prove ourselves to anyone.

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

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11 comments

  1. Richard Borden says:

    I both agree and disagree with your feelings for the officer. I have PAH, diagnosed 2years ago but I’ve actually been oxygen dependent almost 9 years. My liter flow is 4 at rest 7 if moving about (1o liters if exercising but that’s another tale) I often see healthy looking people with handicap placards parking in reserved spots and often find myself thinking “Yeah, RIGHT”. I try to restrain myself from comment because ‘not all illness are apparent’. Sometimes you see them walk off with a bounce in their step you’d kill for and you just want to whack ’em upside the head with your cane and then track down the grandma that let them use her placard and give her Gibbs worthy head smack too.

    • Brittany Foster says:

      Thank you for your reply. I want to clarify that I understand his disgust for those who abuse the system!!! I feel the same way that you do. My reaction was in response to how I was treated in this situation as someone with both an invisible and visible illness. I know there are people out there who use a relatives and that shouldn’t be tolerated.

      • Sacha Larosiliere says:

        Hey Brittany,

        I get it, I myself have PH and I hate wearing my oxygen outside because of the looks I get and strangers would come up to me and wonder what is wrong. I am a big hulking man who looks healthy but is far from it. I have my portable 02 that I bought myself since insurance does not cover it and only used it sometimes when outside. I use my inhaler a lot more. I have become somewhat of a hermit I go out when I have to and at home I am always on oxygen. Yeah people would be judgmental on something they do not understand.

  2. Joanne says:

    Thanks for sharing Brittany. So many PHers have similar stories. The cop was insensitive and just plain wrong and should be educated enough (especially in his role as a police officer) to know that disability comes in many forms. I had open heart surgery in 2016 to get a new pulmonary artery and valve, and sometimes I’m almost glad for this huge scar down my chest, because I’m one of those PHers who “looks fine!”. I keep PH brochures in my car and PH cards in my handbag in case I’m challenged. I have good days and bad days and use my parking permit based on that. I’ll flash my pump if someone asks about my illness. I know some days it’s hard to deal with a person like this and hooray for those of us that keep trying to educate others. Keep smiling!

    • Brittany Foster says:

      I love my zipper scar too! Before the oxygen, the scars were the only “proof” I could have offered !!! Thank you for reading my post 🙂

      • Susan Johnson says:

        Brittany, Its sad that you have to feel that your scar is proof. As if you have to PROVE to these insensitive people that you have a right to a handicap spot. Its also outrageous that a law enforcement officer would do this to you because you did not fit HIS criteria for one. Thank You for sharing with us! You are brave, strong and beautiful inside and out!!! I also have mild PH and use oxygen as needed. It sure has taught me a lot and opened my eyes to your fight. Or should I say our fight.

  3. Teresa says:

    Thank you Brittany for sharing your story. I was recently diagnosed with PH this year, I was never sensitive towards those that “looked “healthy , but have an illness. I never understood until it is happening to me. I wish I could have known more & not been so insensitive to some people in the past. I will now be on oxygen also & fear for the day someone will tell me I look okay, but in reality they don’t know what I’m going through. I hope to be as brave as you.

    • Brittany Foster says:

      Thank you so much for saying that. I understand why people would judge. Educating them is so so so important. It’s difficult to experience it from an invisible illness standpoint as well as a visible one! Keep on staying strong!

  4. Kristin Philipps says:

    thank you for sharing brittany. yes that is a hard one because of people misusing handicap signs. My senior daughter is allowed to park right outside the school this year (staff lot) and many kids have asked her why SHE gets to park there. she is not on 02 right now so its hard to her to “show” how sick she is!!! Good to know other young people are dealing with the same thing…..I pray Gods blessings on you as you persevere through life with PH

  5. Donna Ortiz says:

    Very difficult to deal with! I am on oxygen and feel that it’s the only thing that lets people know I’m “legit”. I too, see people who don’t look handicapped parking in those spots, (is it me or are there fewer of them now that I sometimes need?) I try not to pass judgement as there are many invisible illnesses that I never knew about before. If I am able, I don’t use those spots so someone else can, which my husband thinks is crazy!

  6. Jeanne mattar says:

    So well said. once my husband dropped me close to where I needed to be and went to park the car, we have a disable pass on the window, this person nnoked on the window to point out that we should not use this parking spot, why? Because you are not disable, obviously she didn’t see me get out with oxygen tank

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