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Talking with family/friends

hope this isn’t too left field: how much and to what extent do you share information about your health condition with family and friends? My mom lives several states away and about came unglued when I told her I was in the hospital in February. I haven’t told her about getting very sick again and awaiting specialist evaluation in Denver. Not sure how to explain what’s going on without scaring the pants off of her. 

I think I’m also going to be better about masking when going out in spring too. I recently discovered I’m allergic to lots of tree types, especially birch and there are entire hillsides covered in them (especially around my favorite fishing hole! Grr. And they are my favorite tree type). Just wondered if you had good 1-2 liners sayings for explaining the mask (allergens, avoiding infection and perfumes). I was just gonna throw my allergist under the bus and say doctor’s orders ! Or I’m studying to be a ninja! 😛

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  • Shea

    I wore mymask at Tommy's co-op last Monday and of course the kids are like "why are you wearing a gas mask?" And " what's the mask for? " and I just smiled and said "asthma and allergies" — "nope it doesn't work for poisonous gas, just helps with asthma and allergies lol" .. It wasn't as bad as I thought I'd feel, it was nice getting it out in the open.

  • LK

    As far as talking about how bad a flare is with family who are in another state, that's a challenge.  Especially since they are not around you much they don't see how much it is affecting your day-to-day life.  I know my mom still freaks out when I am not doing well and she lives nearby.  Just a normal mom reaction which is especially strong when they can't come make us "better" because of the distance.  

    Generally I don't keep out-of-state or out-of-close-contact relatives informed of much about my asthma.  Only tell them what is going on if they are going to visit and will be shocked at how I am doing.  Want to give them a heads up.  

    As far as you upcoming testing, maybe tell her about it enough in advance that she can start processing the idea of it.  Frame it in a way so she knows it will give you more information to treat your asthma.  

    As for wearing a mask,  please do!!  I keep mine in my pocket or purse every day and pull it out and wear it in stores, parking lots, doctor's offices, when pumping gas, on chilly days, in the horse barn, etc.  I do get some odd looks but have finally decided that I really like breathing and will put up with all the looks.  Surprisingly, I have also met a fair number of other folks who, after asking about the mask, say they or a relative have asthma and are interested in how the mask helps.

    I used to apologize for wearing it and explain why I wear it.  Now I just explain why I wear it.  Just got these pins.

    or

  • Deborah Bartlett

    Lisa- Those pins say it all! But, in a nice way, and they are cute!

    If I don't wear my mask, I am bound to have an asthma attack. What a fool I would be! That is why it is in my purse at all times and worn everywhere I go. I have a spare at home, along with extra filters.

    I don't get into extreme detail with folks I only speak to once in a while. I do explain a bit if I will be seeing someone. Most folks don't understand. Sometimes I'd be wasting breath I don't have trying to explain. I just say….Wearing a mask to help prevent an asthma attack. ☺

    I tell my mother alot. She always wants to know. I also tell her good things, so it balances out.

  • Pljohns

    Em-that is a tough one-we have no family in town at all(well, MIL has moved here now) but my parents don't understand asthma (my Dad's solution is just quit taking the meds and your lungs will get use to not having it and you'll be fine) so I don't tell them much.  I've been in the hospital a few times and haven't always told them.  they try to understand I think but they just don't.  MIL likes to say she does, but then she comes over with scented lotion on. She never understood my masks but when her SIL started having breathing issues, she ask where she could get some and send her.

    I've tried to explain asthma to them but it doesn't get anywhere so I let it go.  Coworkers know I have asthma but that's all they know-not worth the waste of time to try with them.

  • K8sMom2002

    Em, figuring out who to tell and what to say about your health is a really individual and personal matter — each of us has different comfort zones, and each of us has family members and friends that live on a spectrum of "helps a lot" all the way to "makes things so bad it's not worth it."

    Could you approach it this way? Could you figure out what YOU need and look around to see who is there in your family that can help you meet that need?

    For instance, if you were temporarily unable to make your own medical decisions, who would that person be? If it would be your mom, then maybe you do need to involve her and help her become more comfortable with your current situation.

    The pros and cons of telling anyone your health issues include …

    Pros … When you share with others, people:

    • are more apt to understand and empathize with you.
    • aren't as shocked or surprised when you do get sick.
    • know better how to help you and can advocate for you when you aren't able to advocate for yourself.
    • can offer you accommodations (I'm thinking specifically of your work or school)
    • learn more about asthma (or any disability you may have)

    Cons … when you share with others, people:

    • can worry too much.
    • may think you need more help than you do.
    • may think you're not as capable.
    • may share that information with people you haven't told and don't wish to share.
    • can hear that information and dismiss it or underestimate what you need — leading you to experience disappointment.

    When it comes to family and friends, could you decide what you share with each "circle" of your life, and let them know what they should tell others if they ask about you? That gives the people you share the most with a script to rely on when it comes to hard questions that come from genuine concern.

  • LK

    Cynthia,  You always help make things so clear and understandable!  Really helps me think things through.  Thank you!!  

  • Emelina

    Shea, kids are awesome. Love your response. 

    Lisa, beautifully said. Moms just want to protect their children and help (even when their kids are grown and half way across the country). My mom was so mad that I was sick and my work was being stinkers, I was glad she was several states away. I swear she sounded like she was going to stage a revolution against my work administration. I like your idea of framing the Denver trip proactively; a way to get more info and the tools I need to treat the disease effectively. 

    Call me crazy, but I actually enjoy being masked now. It’s not only protection against allergens, but keeps me from touching my mouth, nose, eyes. And after 6 months of recurrent respiratory infections and being relatively immunosuppressed from all of the steroids, I’ll take a comfy soft mask over getting yet another cold and laying on my back for a week trying to cough up my toes! 

    Cool pins lisa! Are those custom? I need a few of those!

    deborah, I like your simple, sweet and to the point approach! You have an awesome relationship with your mom. You’ve inspired me to call mine more. 

    Lynn, lol, your dad reminds me of my dad. The question of what to disclose came up because my mother in law called and during the chat how things were going for me in terms of work came up, we both looked at each other and I shook my head, and Dh said the typical “she’s fine.” I felt bad being dishonest, but what’s the point in worrying them or letting them know the gory details. Then there was the awkward moment when I stopped by work to drop off forms and I mentioned I’d be on leave again, and someone said you’ll be out for a week? I didn’t know what to say so said I’ll be back as soon as I can.

    cynthia, I love your wisdom, that’s a great way of thinking about what to disclose to who. Lol, I definitely know those who I’m like they’d be so helpful and others I’m like no, just no. I’ll think about your pros and cons and how to approach it. One thing is we are relatively silo’ed from everyone here. All of our family lives in other states. So mainly it’s just figuring out how to talk to my parents (they’ve been traveling for the last month and just got home yesterday) and my in laws. The other trouble is what to disclose to coworkers when they see me not at work and say where ya been? When you live in a small town you have to be really careful since there is the inevitable rumor mill. 🙄

    ill have to think some more! Thank you all again for your wisdom and insight!

  • LK

    Em,  Yes, the pins are custom.  I ordered the pins from a business Shea had used.

      

    Here is what it looks like.  I ordered the 3" round pins.

  • Deborah Bartlett

    Well Em, to sum it all up…we are glad that you dropped by and decided to stay. Can't imagine a day without you in it. I guess that must mean that we all love you, Em!! 😂❤💜

  • Emelina

    Lisa, sweet! Those are so cool! Going to have to order some too! 

    Deborah, I’m so glad I found you guys and you welcomed me with open arms. Plus with chocolate, no wheezy land and amazing meal ideas, why would anyone want to leave? Oofta, today is not being kind. Time to go curl up and rest. Hope you all have a wonderful day.

  • Melissa G

    I have been pondering this question. 

    When Bekah was younger, I probably gave out way too much information. As she has gotten older, I am more particular what information I share and with who. It really depends on the situation and the audience sometimes. 

    I share more if people ask questions and are genuinely interested in what is going on with Bekah. 

  • Shea

    I find it hard to know what to share too. Sometimes I expect that if people know, they will be more accomodating, then when they often are not, I get really mad.

    … I really dont like that cycle. So now my new thing is to just keep my mask near, my button on my bag, answer short and simply to questions with a  "asthma and allergies" reply, and just leave places if it is something like a cat or dog in a building with me (I usually audibly grumble about how some of us have severe allergies to dander and we wont have anywhere to safely go). 

    In an ideal world, I would be able to open up about my situation and history and people would respond by being more respectful and not bringing dander around me. But the last time I did that at Tommy's co-op when a person brought their puppy the 3rd week in a row (once I saw them take it in the building briefly, but the rest of the time they have it outside where everyone sits with blankets and kids are running around petting it and carrying it everywhere, and they let it use the bathroom right where the kids run around (many are barefoot). So I thought if I told them how allergic Tommy and I are, especially me– how skin contact gives me hives and airborne dander really messes with my asthma, and I have a severe allergic disease triggered by it, that maybe the next week they wouldnt bring it or theyd sit more away from the group. Nope. I got poor responses. Verbally they deflected to stories of their friends don who cured his asthma by swimming (I responded by chlorine triggers my asthma worse) and all their weird asthma and allergy cures. And when it started raining last week (the week after I talked to them) we all moved under a pavilion, and I had set up my spot in one corner they put their blanket right next to me!!! – I had to get up and move then put my mask on. Then the child, a little girl l, started carrying it around and Tommy was nervous because his friends were touching it and petting it then coming right by him and we were all in a smaller pavilion outside but close. I almost quit co-op after that. This is supposed to be an allergy-friendly group.. No peanuts are even allowed to be brought onto campus. Im still mad about this. But I decided I will sit away from the group and where my mask in the class and I gave Tommy some good things to say if kids try to bring the dog by him or get him to pet it. But I am very frustrated by it and feel ostracized. I am looking into other activities for us to do because even regular schools have less fresh dander coming in than this place now. But we will finish the semester anyways. 

     

  • LK

    Shea,  I am so sorry the coop is not understanding or helping with the puppy issue.  Is there a board or group of leaders who have some say in these matters?  Sure seems like they people with the puppy should be told to leave their puppy at home.  You have taken many precautions to keep you and Tommy safe and healthy.  That must be so frustrating when the coop says it is an allergy-friendly group.

  • Shea

    I guess I havent tried to talk to the organizers of the group yet– it would be worth it to. I will start a letter draft. 

  • Emelina

    Thanks for sharing your thoughts Melissa and experiences with Bekah. It’s really tough. I’ve just decided to keep the cards close to the vest. 

    Shea, ugh! That is so frustrating about the puppy at the coop. Good luck with your letter and I hope you get a good response. Puppies are cute, but seriously, they are also a trigger for many. Maybe they need the admin to reiterate the seriousness of bringing allergens/triggers into the school. It’s like if you had someone with anaphylaxis to peanuts, they wouldn’t condone someone bringing peanut butter cookies and a peanut oil diffuser to school! Ugh! 🤞hope things change for the better soon! 

  • Shea

    There was no puppy at co-op this week (and I hadnt even said anything… Yet) So maybe they did see Tommy and I's discomfort last week. And, my asthma didnt flare up on the classroom after the lunch hour (which is when everyone was petting the puppy a lot). So that means it probably was due to the dander carrying in on people. It is crazy ehat a difference it made in our whole day

    Also, I had to make a Target-run, and No dogs in Target!!! Woo hoo!!! 2 for 2! 

  • Wheezy Me

    My friends accepted it quite well. Necer made a big deal if my asthma. My mom took it harder, understandably… so I didn't tell her much.

    Em, you got tons of wisdom words here… just adding about the masks:

    If you really want to explain your situation, use one of Lisa's lines (remember so many people have to explain such a thing- why they wear glasses/ avoid certain foods/ inject themselves etc).

    If you just want to get annoying people away, tell them you just got back from some tropical region with a really bad bloody cough… They will fade away in a second!😉

  • Emelina

    Great advice wheezy me! Lisa’s lines and her buttons are cool! Lolol you made me snort about the annoying ones. A nasty bloody cough or uncontrollable diarrhea … that will get them running! 😈 I love your sense of humor!!