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How to handle things when friends say your asthma is not real?

DS13 was upset today because some of his friends said that his asthma was not *real,* and he didn't really need medication for it.  I am really frustrated that this type of ignorance still exists! He knows they are wrong, but I know it really hurt his feelings. I know I dealt with this as a child, but I had hoped we had come a long way over the last 30+ years!  

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  • K8sMom2002

    @dory2005,

    I took the liberty of moving this into its own new post so that more eyes would see it!

    Thirteen is such a tough age … kids want to handle things by themselves (especially guys!), but sometimes they don't yet have the experience. Was this at school? Do you think it crossed the line to bullying?

    While these tips are about food allergy bullying, many of them will work for bullying about other health conditions as well.  It's a Kids With Food Allergy Blog called 

    And this kindergarten teacher integrated teaching about food allergies into a regular lesson … .

    Could you approach your son's teacher privately and ask if the teacher could begin to incorporate more reading material (either from current events in newspapers or magazines or books) about asthma and other health conditions? It sounds like these kiddos could benefit from learning about how to understand that health issues can look different from person to person.

    She (or he) need not make a big deal out of it … but exposure to other people's health issues can go a long way to build awareness and tolerance.

  • Marie E Natzke

    No unfortunately there is still a stigma about asthma. My previous employer told me it was an emotional problem.

  • K8sMom2002

    Yikes, Marie! I am so glad you don't work for that employer any more! And it stinks that you had to hear that. 

  • Brenda Silvia-Torma

    @dory2005 That's awful that friends treated your DS that way. Does he know why they said that? Depending upon their reasons, his response to them would change:

    • If it is an ignorance issue, then  to Cynthia's suggestion.
    • If they are really close friends, perhaps the friends are worried about him and the easiest way for them to deal with it is to and pretend that it's not a problem?
    • I remember in my adolescent psychology class taken years ago that teens have believe that they are invincible and that nothing bad can happen to them. If the friends are of that mindset, they may not believe the seriousness of their friend's diagnosis. 
    • They are not real friends who will ever change their opinions?

    It stinks that people are not more aware of chronic health conditions. Everyone is dealing with something!!

    I hope your DS figures out why these friends said what they said…if they are good friends, they'll hopefully change their thinking and become more accepting/willing to learn what they don't yet understand.

    Brenda

  • Wheezy Me

    Dory- yeah, it's hard… but to begin with, who asked for their opinion? What made them say it? Did he explain? At their age, unlike Marie's boss, there's the possibility they just don't know and have to learn…

    And Marie- I know it's easier said than done but we have to ignore such people. We know better. And I'm glad you no longer work for him too.

  • Marie E Natzke

    Wheezy Me, @Dory2005, Shea,K8SMOM2002

     Actually I've heard that a few times. When I was in grammar school a teacher told my Mom I had an emotional problem. I think it was because my eyes would start tearing. I wasn't crying just runny eyes. So my Mom told her her I wish I would have known that sooner, we wouldn't have had to remove our dog from thehome, by order of the Doctor. She didn't know what to say to my Mom after that.

    It's just plain ignorance. Lack of taking the time to find out about the problem. I blame the drug companies as well. Just take this allergy pill and you can go and do and have a pet and no more allergy! 

     

  • dory2005
    K8sMom2002 posted:

    @dory2005,

    I took the liberty of moving this into its own new post so that more eyes would see it!

    Thirteen is such a tough age … kids want to handle things by themselves (especially guys!), but sometimes they don't yet have the experience. Was this at school? Do you think it crossed the line to bullying?

    While these tips are about food allergy bullying, many of them will work for bullying about other health conditions as well.  It's a Kids With Food Allergy Blog called 

    And this kindergarten teacher integrated teaching about food allergies into a regular lesson … .

    Could you approach your son's teacher privately and ask if the teacher could begin to incorporate more reading material (either from current events in newspapers or magazines or books) about asthma and other health conditions? It sounds like these kiddos could benefit from learning about how to understand that health issues can look different from person to person.

    She (or he) need not make a big deal out of it … but exposure to other people's health issues can go a long way to build awareness and tolerance.

    Thanks Cynthia! Yes, it happened at school, and it happened at PE. He needed his inhaler (he's supposed to take it before PE), and the kids were acting like he was just trying to get out of class when he was struggling to breathe.  I'll talk to his PE teachers (they have a huge group so there are three teachers), and hopefully, that will help as well.

  • dory2005
    Brenda Silvia-Torma posted:

    @dory2005 That's awful that friends treated your DS that way. Does he know why they said that? Depending upon their reasons, his response to them would change:

    • If it is an ignorance issue, then  to Cynthia's suggestion.
    • If they are really close friends, perhaps the friends are worried about him and the easiest way for them to deal with it is to and pretend that it's not a problem?
    • I remember in my adolescent psychology class taken years ago that teens have believe that they are invincible and that nothing bad can happen to them. If the friends are of that mindset, they may not believe the seriousness of their friend's diagnosis. 
    • They are not real friends who will ever change their opinions?

    It stinks that people are not more aware of chronic health conditions. Everyone is dealing with something!!

    I hope your DS figures out why these friends said what they said…if they are good friends, they'll hopefully change their thinking and become more accepting/willing to learn what they don't yet understand.

    Brenda

    I really think that they just don't know/understand because they are healthy kids who don't have any medical issues. They thought DS was trying to get out of class when he really needed his inhaler. And at this age, it seems that insulting one another is what boys do to each other.  DS and I did have a long talk about it, so I feel much better because I know that he can advocate for himself. 

  • dory2005
    Marie E Natzke posted:

     

    It's just plain ignorance. Lack of taking the time to find out about the problem. I blame the drug companies as well. Just take this allergy pill and you can go and do and have a pet and no more allergy! 

     

    DH says that the way asthmatics are portrayed in movies/TV doesn't help this either. 

  • K8sMom2002

    Oh, yes. Movie-asthma. One puff of the inhaler, and you're fixed. Or worse — you're doomed to being an outcast because you use an inhaler.

    I hope the talk with the PE teacher will help! Were these close friends or just classmates? That makes a difference in the approach.

    But NO one should be treated dismissively because they have asthma! And no one should be told they're "just trying to get out of" something because of asthma — or any health condition. 

    I have endometriosis, and throughout high school and college, I had terrible issues during that time of the month. I could barely put one foot in front of the other, much less do PE. I still remember a college coach that also taught phys ed educational methods courses dismissively saying, "What? I don't have cramps, too?"

    Only the person who has the issue really understands the extent of the problem. I wish we could teach people — kids and grownups alike — to not second guess or dismiss others' health issues.

  • Melissa G

    dory, that is certainly frustrating and heartbreaking!  I hope after talking with the PE teacher, things get better for your son at school. 

    Marie, I have heard that before…that asthma isn't real, that there had to be some emotional trauma that has caused the "breathing issues". 

  • Dar007

    I work in an ER department and what I have found is that it is best to hide my asthma. (Not saying this is right or anything but for me I have learned to do this). It doesn’t matter how educated you are about this, people (unless they are going through it themselves) will have opinions. It is not  everyone, but there will always be someone who will think you are not really having an issue…that it is all in your head. Compassion and empathy is hard for some. I can imagine it is even worse for kids at school. I am sorry this happened. 

  • K8sMom2002

    Oh, that stinks that you work in an ER … where people should definitely be both educated and empathetic, and yet you still feel as though you have to hide your asthma.

    What opinions have you run into with your asthma? Have you worked in other ERs and they are the same? Sometimes one workplace culture can be different from others, and I'm hoping it might be the case for you. 

  • Wheezy Me
    dory2005 posted:
    I really think that they just don't know/understand because they are healthy kids who don't have any medical issues. They thought DS was trying to get out of class when he really needed his inhaler.
    Have they never seen him short of breath in the middle of a game he wanted to participate in, for example? It's strange to think that attacks come when you want them to. Maybe he should explain what asthma is, that it can take him out of  sleeping, playing etc as well as out of class…
    I hope the PE teacher helps. PE teachers should know about asthma as it's so common in school aged children.
  • Dar007
    K8sMom2002 posted:

    Oh, that stinks that you work in an ER … where people should definitely be both educated and empathetic, and yet you still feel as though you have to hide your asthma.

    What opinions have you run into with your asthma? Have you worked in other ERs and they are the same? Sometimes one workplace culture can be different from others, and I'm hoping it might be the case for you. 

    Well you would be surprised how desensitized people get. We see people coming in everyday with truly nothing wrong other than needing attention. And that makes me sad because obviously their problem is not being felt with. 

    What I see with myself or others in the department is rolling of the eyes, or impatience because on the other side (the workers not patients), people call in sick all the time when they shouldn’t. So there is the whole attitude where you are doing this because you just don’t want to work. Which is not me because I love what I do. I could be having trouble breathing but you can’t see what I am feeling. So people just don’t get why I need to take a break for a moment. Just really a huge desensitized attitude which is ironic since the whole profession we are in is about caring and compassion. People mostly are worried how this will affect them. I have learned that nobody want to see  or hear about it so I just deal with it away from anyone seeing what I am going through. I had such a hard time when I went for tests to test my lung capacity because I am SO used to telling everyone “I am ok. Nothing is wrong.” Lol 

  • Shea

    It took me needing my intestine removed and developing life-threatening food allergies to get through to others and myself that I couldnt eat certain foods… I am such a freaking pushover and sufferer… Then I messed with my cat and dog allergies so bad trying to be superwoman that I nearly died and developed a rare disabling allergic/ asthma  disease… That was a nice wakeup call to stand up for myself and I still probably would have let others put me down and tell me to cover up my disease and ignore my own body and work like a horse until I died of exhaustion. Noe I STILL have a hard time standing up for myself and I see myself cowering ALL the time but I dont want to be overbearing or a social outcast either… Its just lime… Do you settle for bad friends out of fear of rejection or do you stand up firmly and say "This is me, this is real, I matter too, and if you dont like it or believe it, get away"… And I prefer being alone to being around people who put my life at risk or are parasites or not real friends. And only by doing tgat can I ever find real friends and real supportive people. But it has been THE hardest part of all of this– honestly i testinal surgery or struggling to breathe and working through my body in health crises was easier than standing up for myself on my own has been…. And honestly that is why this forum is so great. 

    I am not sure if they have teenage forums like this but I really with they did for those with health issues to connect and just know others go through these things and see how they solve issues like this.  

     

  • K8sMom2002

    Dar007, hugs, hugs, hugs … I've read that in the healthcare industry, it's often seen as weakness to admit you are sick. I'd hoped that wasn't the truth, but it sounds as though in your work culture, that's the case.

    Shea's experiences are a great reminder that if we don't advocate for ourselves, then who will? 

    Is there anyone in your ER's leadership who might be more understanding? In families, there is usually one person who is the chief influencer … they're the ones who everyone schedules things around. "No, we can't have Thanksgiving dinner at 7 because Jill can't be here until 8" or "Hmm … let me ask Jill what restaurant/movie/book would be good." If you can convince your "Jill" about your ideas, then you have a powerful ally.

    Work families are no different … usually there is at least one person who leadership listens to … could you start there?

    Could you at least disclose your asthma to HR and let them know that you do have asthma? 

  • Dar007

    Cynthia, I guess I could let HR know about it but I think it is already in my file. When I was first hired, I had immunizations with the staff nursing office and they took my medical history. I have just learned that with my co workers, it is best to just keep this to myself. 

    I only developed asthma later in life. I remember Jr High, (my father was my principal…eeek!)  and can’t imagine how hard it would be for youth to deal with that and school and the other kids. Not easy since people, especially kids at that age, tend to be pretty judgmental towards each other. 

     

     

  • Shea

    When I think of covering my allergies and asthma up, I think of Rudolph trying to cover his nose up… I love Rudolph — I totally identify with him, and I try to see my allergies as a unique red nose that will help guide people (Maybe toward good indoor air quality–which never hurt anyone), and cleaner, less-polluted outdoor air (clear to smog and fog!)

  • LK

    Saw something new (and to me a little odd )  to keep your nose warm the other day online.  It is a crocheted little "cone" that fits just over your nose and has loops that go around your ears like a regular mask.  Not quite sure what to think of it!!  

  • dory2005

    I remember when I was diagnosed with asthma as a 13 year old, I was hospitalized for almost a week. I had been so sick for so long (allergies) that kids at school had nicknames for me like Sneezy and Wheezy. It was awful. This was before homeschooling, but I missed almost half a school year, but still managed to make all A's. It took about a year to get my meds right and I was able to get a nebulizer for home, which made a huge difference for me. Kids were pretty awful so I know exactly what DS has had to deal with. When I was in school, teachers weren't exactly nice about my asthma, and acted like I was a bother, so I try to be understanding with my kiddos when it comes to illnesses. My colleagues know how sick I've been with asthma, so they are more empathetic than most, so I really appreciate their understanding with DS.

  • K8sMom2002

    Dory, your story reminds me how far society as a whole has come in embracing people with health issues. We're still not where we want to be, but thank goodness many people (including teachers) do understand how hurtful words can be. 

    Dar007, could you approach HR again and ask about possible accommodations in case of a severe asthma flare or the presence of a trigger? That way at least it will be on their radar. I can understand not wanting to rock the boat … still, it's easy for people in charge to be busy and absorbed with day-to-day stuff and kind of forget special needs for their employees. I know we sort of went through that with DD when she made the move to dual enrollment courses. Her teachers signed disability agreements at the beginning of the semester, but they were still taken aback midway through when she had to approach them for special consideration. We were glad that we'd taken the time to formally ask for accommodations before she actually needed them.

    Shea, I LOVE your Rudolph comparison! PERFECT! And I love how you always seem to find a positive silver lining of how your asthma can actually help people. It's not like we want asthma … but it's an ill wind that blows no good.

    Lisa, ya got to find a pix and post that nose warmer!

  • LK

    Here are the ones I saw.

    Not sure if they are a gag gift or serious!  

  • Dar007

    LK – lol! That is funny. I don’t know if they would be comfortable or not…but lol 

  • Wheezy Me
    Shea posted:

    When I think of covering my allergies and asthma up, I think of Rudolph trying to cover his nose up… I love Rudolph — I totally identify with him, and I try to see my allergies as a unique red nose that will help guide people (Maybe toward good indoor air quality–which never hurt anyone), and cleaner, less-polluted outdoor air (clear to smog and fog!)

    Nice comparison, Shea!👍 I love your positivity.

    Thanks to my asthma, I became more aware of air quality, pollution, and the environment in general. I reuse and recycle whatever I can. And I'm happy to thrive and become a better person thanks to it

  • Shea

    Thank you WheezyMe (and everyone)– Im glad you get the Rudolph message in it all. And other real animals too–like frogs– are more sensitive to chemicals and pollution and we use them as indicators too– so sensitivity can be useful.

    The only thing Id worry about the nose warmer is that it might get dusty and germy– itd almost have to have a filter in it like the masks do, that can be replaced… (But might as well wear a mask then.) Luckily, in Florida, we dont typically need nose warmers, but I did just buy a scarf. My neck and chest have been breaking out where my shirts typically dont cover so I thpught a scarf would help. At first I was going to try and crochet one, but I wanted something lighter and that doesnt collect dust easily– It actually came with a zipper storage bag which I think is a great idea– keeps the scarf clean and dust-free and I can carry it in my backpack purse. 

    Cynthia, I think it is so great how you got the accomodations situated in the college. I think it is important to not only get the initial "yes we can do that" but actually hold then to it and have it all in line "before you need it"– which is a must with allergies and asthma and so many health conditions. We need our epipen and inhalers packed "before we need it", we need our action plan, every day. We need accomodations to be realized, not just hypothetical. Im so glad you did a thorough job with the college, I KNOW it is going to be helpful and a good start for your DD!

    Dory, I am glad you have helped sow a culture of empathy and understanding in your school environment. I agree that we have come a long way in recognizing the importance of ADULTS in the school system in modelling appropriate behaviors and reactions to the kids different physical, emotional, social, and environmental needs– and I know people like you and Lynn and others here in the workplace really help to bring in the awareness of managing allergies and asthma and what a difference it can make! 

    I know Lynn's crew knows not to use scented trash bags, and Dory's crew and class not to spray on perfume in her classroom. And my friends and family know Tommy and I can't be in an indoor environment where cats or dogs reside, and that we dont pet them (not because we dont like them, but because we dont want to get sick– especially me after a lifetime of trying everything and suffering, I am so thankful that they know I am done trying things, and that avoidance is my treatment of choice.. And Tommy has no desire for shots or medicines either, he just rather avoid too). 

    It is a constant process though– since we are in a nee city now, we have started to raise awareness in people we meet now… At least for the big triggers. But, it does get tiring, and I dont mention all the triggers at once usually. I am still teaching my family. My mom loves candles. They bother me–especially scented. Ive mentioned it before but she still lights them at gatherings. One of her Christmas presents this year is natural unscented Beeswax candles. I have read up some on them, and they sound pretty amazing, so hopefully that will help.

     

  • Pljohns

    Cynthia you are right-as a whole, we have come a long way but there is still such a long way to go.  I work in the health care field-have my entire adult life and I find it is the most unforgiving of them all.  My current employer refuses to put a fragrance free policy in place, my clinic director started out being very supportive but has gone back to "what's cheaper" even though i was able to prove to him that fragrance free is the same price, if not cheaper in some cases and my own family (not my immediate family but the extended family) still thinks that it's OK if they wear just ONE frangranced thing instead of the shower soap, the boys spray, the powder and the perfume at the same time. They don't understand that even the ONE causes me problems.

    I've had bosses tell me that I was too sickly to do my job well, make snide comments about having to "accommodate her".  It's been really tough-not to mention getting the mall cops called on me for using my neb that someone thought was a crack pipe, had airport security tell me I had to go to a smoking section to vape–after a while you just learn to laugh about it.  It doesn't make it any easier or less hurtful, but unfortunately, my experiences have been less than stellar.  Unfortunately, it has just reinforced that I don't want anyone to know I have asthma so I end up in bathrooms using my neb or not using it at all until i can get safely to myself-not the smartest thing to do.

    I did file a claim on a former employer with EEOC and won because they refused to reasonably accommodate my asthma and made unreasonable work requirements on me with no help.  Notice I said FORMER employer-I left as soon as I could find another job-and they were a major health system.  We still have a long way to go but I do know if we don't continue to try and continue to advocate for ourselves, people will never understand.

  • Brenda Silvia-Torma
    LK posted:

    Saw something new (and to me a little odd )  to keep your nose warm the other day online.  It is a crocheted little "cone" that fits just over your nose and has loops that go around your ears like a regular mask.  Not quite sure what to think of it!!  

    Like ear muffs for your nose….a nose muff!  

  • K8sMom2002

    Lynn and Shea, it can be a long and difficult journey, and sometimes it can be disheartening. But then I remember two things …

    And when I get discouraged and I want to say I can't do something, I have to remember to be a "not-cutter"…

    One day, one step, one person at a time …

  • K8sMom2002

    Lisa, those nose warmers are funny! But I would really, really hate to wear one if I had a cold or my allergies were flaring! 

  • LK
    K8sMom2002 posted:

    Lisa, those nose warmers are funny! But I would really, really hate to wear one if I had a cold or my allergies were flaring! 

    I know!  Yeck!

  • Shea

    Thank you Cynthia for that reminder to try to focus on one step at a time, and one I can… Even a tiny "I can" can go sooo much further than any "I can't." Sometimes my I can is to just stay home and keep my home trigger-free– and that was much more difficult to do years ago but I have come a long way since getting my own home this year.

    Social situations can be tough for me/us at times, but I really feel I am making progress in that area too.

    Today we went out to Tommy's homeschool co-op's Harry Potter themed Christmas party. It was set up outdoors and was really nicely decorated and they had a potluck and are nut-free (we have other allergies too so I brought foods we could eat that I knew were safe, but nuts is the worst allergy so its nice to know nothing on the table had that in it).

    One person did bring a dog for a while but we stayed far from it and we were all outdoors so I didnt have to worry about dander getting on us or carpeting or in the ac vents. All the parents help out at the co-op and are very understanding and accomodating and caring for each person/families unique needs and abilities, and I feel the students and parents thrive in this type of voluntary environment– every act is just out of passion and care, not forced but just done out of inspiration. I am glad that we found a group/ environment of people we feel pretty comfortable and safe with, and we had a really good time. 

  • K8sMom2002
    Shea posted:

    Thank you Cynthia for that reminder to try to focus on one step at a time, and one I can… Even a tiny "I can" can go sooo much further than any "I can't." Sometimes my I can is to just stay home and keep my home trigger-free– and that was much more difficult to do years ago but I have come a long way since getting my own home this year. 

    Shea, I LOVE how you reminded us of saying "no" to things that are not helpful for us are part of the "I can" side of things!

  • Shea

    It is important to keep friends and family informed. This meme joke is a good example of why: