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What not to say to someone with chronic illness

Hi all, 

I had a bad night, I cried after someone told me all of my problems are just depression and I just need to get out and think positive. 

Maybe this is just a rant/venting thread, but I hoped maybe we could spin it positively. What are things you’ve heard that no one should say to someone struggling with chronic illness, and what do you wish they said instead?

 

– I’ve recently been ill with a respiratory virus, gut side effects and profound fatigue from steroid adjustments. A friend said this is just depression and I need to go see a psychiatrist and get out more. Um no, I can’t go out with a hr of 120, feeling dizzy when I stand up, shaking chills, low peak flows, o2 sats that drop when I walk and nausea. What I wish people said instead: I’ve heard you’ve been struggling recently, how can I help? 

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  • Breatheeasy

    My mom told me I’m weaker than her. I told her I get sshort of breath and the meds make me feel crazy but I’m managing my life just fine. To which she replied I’m being lazy and that I’m using my asthma as an excuse to be lazy. I do everything at home coz I live with my parents now. I take care of the cleaning when their domestic help doesn’t come in and I do their laundry and I take care of and homeschool DD who is hyperactive all day long. Apart from that I cook and clean up. The only thing I don’t do is clean the washrooms. 

    She tells me that I don’t do enough for DD. She goes to DD’s room in the night to sleep with her. She thinks co-sleeping is great.  And she tries to give me a hard time when I go do my inhalers. She says I’m getting addicted to them and instead I should Spend that time on watching DD because well according to my mom a mom is supposed to be by the child’s side all the time. She’s acting so crazy now-a-days. She’s seen me in the hospital and everthing and well she thinks I’m using asthma as an excuse to be weak? I don’t get it. 

  • Emelina

    I’m sorry breatheeasy, asthma does not make us weak and we are not addicted to our inhalers. Stay strong. 

    Thanks Melissa; I’m sure the pred emotional rollercoaster isn’t helping. Just hurts when you are trying and someone on the outside, NOT a doctor and not on my care team, comes running in with their medical opinion. 😰

  • Melissa G

    I understand Em. We have gotten many opinions from people over the years. Some comments have hurt, others I have had to just let roll off. 

  • Pljohns

    Em and Breatheasy-I'm so sorry-people just don't understand and their comments hurt.  for you both

  • Shea

    Ugh. I thought we were beyond asthma as a "psychiatric" disease. Ummm no we cannot just make our freaking throat close up and heart race and vitals be crazy to the point of death even– and WHY would we want to???? Oh yes, let me pretend to struggle to breathe all day, oh wait–!!! im not pretending my doctors can tell, there are tests that can tell, there are meds that help sometimes, there are avoidance strategies that help sometimes, other humans have this, we have an idea of some causes like allergens and harsh chemicals and lung irritants and heavy pollution!!   ##- and yeah it involves things I don't want, like Meds I now have to pay for, take, and deal with side effects– and to have to avoid things others don't have to like certain cleaning products and not be able to be as independent as Id like and HAVE to pay for services not bc im lazy but bc it will mess up my ability to breathe and live!!!– let me pretend to have this problem for attention so I can lose my relationships and job and not be able to hack it independently and slowly watch my dreams float away like Tom Hanks watching the volleyball Wikson fliat away in the movie Castaway… Now I freaking AM depressed because the people I did have left who I thought wouldn't leave, my family, are shirking me off and blaming me and saying its in my head– now I really do feel helpless and money-stressed and I have a medication that can turn me into the Hulk and make my body misshapen and I will yell at people when they say this is in my head and that I imagined this up to get outta vacuuming.. Because… Are you freakin kiddin me???!!!

    I know it. Ive been through that.. I have to keep reminding myself and others of my action plan. That thing is like my go-to document. I explain it and re-explain it. I cant do that right now– hopefully I will be able to soon, right now I can do this.

    My mom, bless her soul… I say I am not ready to go swimming tomorrow bc my bruises hurt and Im not ready for pool. 25 minutes straight she reads from online things to put on or do for bruises. Im like, "i appreciate it and I might use some of those, but I really dont want to talk about this anymore"… Because she will anxiously do that– compulsively, and I just want to take it easy and do a gentle walk tomorrow. That coukd have been the end of that. Then she switches over to another health remedy. It isnt just her. 

    This stuff is everywhere and comes from everybody. I just say, I dont want to cover myself in pineapple, lemon, toothpaste, and frankincense… Not today at least…

    I dont want to take 17 supplements that each cost $25 and interacts with my "western medication" that is part of a corrupt system and misused science and money-making schemes if big pharma…  All I know is their med works and helped me… I dont care if its a steroid.. Or if its habit forming .. I needed to breathe and it was there and it worked and Im so thankful because it really us scary not being able to breathe– it really is tiring! And I AM doing all the other stuff to.. The avoidance, the education, the masks, and the mindfulness, the doctors visits and the positive thinking– i tell them, you might think about my health or problems for a few minutes a day, if that, and I appreciate ehen you do– but I think about them ALL day and I talk to experts and read studies more than you– I dont expect u to know as much about this disease or about me and my body as I do– I just expect that you dont pretend like you know more. 

    All I want others to do is respect me and support me in following my treatment plan. And Dont call me a liar. 

  • Emelina

    Thank you Melissa, Lynn, Debbie and Shea. Hopefully as time goes on I’ll be better at being a duck and letting the unhelpful comments roll of my back. 

    I loved your entire response Shea. If I could, I’d print it out and frame it. I just hate it that not only do I have to be on guard against what’s going on in my body, and attentive to my meds, doctors, appointments, side effects and everything else asthma brings (oh yes, discrimination in the workplace) but also outsiders who want to run in and join the fun by making me feel ashamed for resting and not running around while ill? I should print my CT scan and plaster it to my forehead along with the shirt: no you are not house MD and I do not need fixing. Go away. 

  • REL

    While we do deal with asthma our family's biggest problem is a plethora of severe food allergies. I can't tell you how many times someone said I could have prevented my kids' medical problems just by eating yogurt when pregnant, introducing them to solids earlier, etc etc (btw in most cases I coincidentally did all those things, grrr…). if it were that simple, don't you think the genius who figured that out would have been a billionaire by now, but the people telling me these things are very confident because they read an article referring to some research study. The other thing I hear is, "oh, your kids will outgrow it". Maybe they will, but in the meantime I'm not going to raise my kids hoping they are someone who they are not!

    Like others have said, I'm usually able to let comments blow over but it is annoying and a little offensive

  • LK

    I hear you all on the things people say and do that are hurtful and sometimes deliberately so.  Whether it is family, friends, acquaintances, neighbors, coworkers, or total strangers, it does hurt for many different reasons.  It is usually when you have your guard down and aren't expecting it.

    Em, Here's your good spin.    

    The GOOD THING about this is that you all have found these forums!!     

    Where wonderful support and understanding from others who have gone through the same or similar struggles abounds!!   Even when we are all having tough days we find, with amazing support from the Good Lord, the strength to encourage and support each other.       

  • Breatheeasy
    REL posted:

    While we do deal with asthma our family's biggest problem is a plethora of severe food allergies. I can't tell you how many times someone said I could have prevented my kids' medical problems just by eating yogurt when pregnant, introducing them to solids earlier, etc etc (btw in most cases I coincidentally did all those things, grrr…). if it were that simple, don't you think the genius who figured that out would have been a billionaire by now, but the people telling me these things are very confident because they read an article referring to some research study. The other thing I hear is, "oh, your kids will outgrow it". Maybe they will, but in the meantime I'm not going to raise my kids hoping they are someone who they are not!

    Like others have said, I'm usually able to let comments blow over but it is annoying and a little offensive

    Yeah some people go ‘how do you resist dessert‘ when I am at a party. And I’m like – really? Eat it and be out of breath for the next few days because I enjoyer a dessert for 2 secs?

  • Deborah Bartlett

    Here is a good one. My psoriasis is bad right now on my elbows. It hurts. I said to my husband, last night, Look at my elbows. They hurt. He showed me his elbows and said This is what elbows are supposed to look like. I thought that was darn mean. I walked away because I didn't want to give him the satisfaction of seeing tears welling up in my eyes. Best thing to do is consider the source and let it go. Move on. 💪

  • Breatheeasy
    Deborah Bartlett posted:

    Here is a good one. My psoriasis is bad right now on my elbows. It hurts. I said to my husband, last night, Look at my elbows. They hurt. He showed me his elbows and said This is what elbows are supposed to look like. I thought that washstand  darn mean. I walked away because I didn't want to give him the satisfaction of seeing tears welling up in my eyes. Best thing to do is consider the source and let it go. Move on. 💪

    Oh my yeah that is what my ex would have said too. 

    A friend of my ex’s met me after the divorce at someone’s party.  My eczema was bad around my chin at that time. She has a child with eczema but the lady chose to attack me anyway. She said ‘my why did you show up with skin looking like that?’. I said be happy this is not happening to you and this is what I look like when eczema flares and I m not hiding it.  she sas ‘I would never let my skin look like that.’ I told her that she’s so stupid and walked away from her.

  • K8sMom2002

    Hugs, guys!

    The stuff you are hearing breaks my heart … not just because it's not helpful for you, but because I've heard much the same over the years, and I know how much it hurt me.

    A friend (a GOOD friend who understood human nature and also chronic illness) pointed this out to me and it has really helped …

    Grief about loss — the loss that comes with a diagnosis of a chronic illness, the loss of "normal" and being able to take life for granted –  isn't just mine. My family and friends are grieving, too.

    Sometimes, their denial comes out as "helpful fixes."  

    They want to fix me (or my daughter) and move back to where life was normal and happy, and they could take it for granted.

    When they say things like this, it can make me think of two things:

    1. That my illness is affecting them, and it's noticeable — which restarts my own grief
    2. That they are focused on fixing THEIR pain and not mine

    But if I can focus on the fact that they are grieving, too, I can re-frame it. I can say, "They love me, and they want the best for me, even though they may not know what the best for me is."

    Yes, sometimes I get tired of being the one who always has to advocate and educate, of being the one who has to comfort. But if I show them empathy, then it's a (hopefully) a model that will teach THEM how to show ME empathy.

  • Emelina

    Rel, thanks for sharing your experiences. I’m sorry people were unkind. It’s ironic how people say eating yogurt while pregnant, breastfeeding or the timing of introduction of foods is the cure all! 🙄

    Lisa, you are absolutely right. I am so grateful for this group. 

    Breathe easy and Debbie, I am sorry people are cruel. There’s no reason to treat you that way. I used to have a miserable time with hand eczema – skin conditions are hard, particularly when in highly visible places. 

    Cynthia, thank you for your insight and perspective! It is very helpful to see through the other persons eyes and what they are experiencing. It’s helpful to remember illness affects everyone around us. I love the idea of trying to show them empathy and seize a teachable moment. I’m not sure I’m ready to educate; still too sensitive and raw for me, but at least I can be better about letting the “fixes” roll off my back and not create new wounds.

  • LK
    K8sMom2002 posted:

     

    A friend (a GOOD friend who understood human nature and also chronic illness) pointed this out to me and it has really helped …

    Grief about loss — the loss that comes with a diagnosis of a chronic illness, the loss of "normal" and being able to take life for granted –  isn't just mine. My family and friends are grieving, too.

    Sometimes, their denial comes out as "helpful fixes."  

    They want to fix me (or my daughter) and move back to where life was normal and happy, and they could take it for granted.

    When they say things like this, it can make me think of two things:

    1. That my illness is affecting them, and it's noticeable — which restarts my own grief
    2. That they are focused on fixing THEIR pain and not mine

    But if I can focus on the fact that they are grieving, too, I can re-frame it. I can say, "They love me, and they want the best for me, even though they may not know what the best for me is."

    Yes, sometimes I get tired of being the one who always has to advocate and educate, of being the one who has to comfort. But if I show them empathy, then it's a (hopefully) a model that will teach THEM how to show ME empathy.

    Cynthia,  It always helps immensely to hear how you deal with things.  You bring such a fresh perspective that it helps us realize things we may have not even admitted to ourselves yet.   Thank you!

  • Shea

    Em, that lady who said that to you was completely off-base. 

    I am a naturalist– I see beauty in a person's natural form– that is my style now. When I was younger I went through a period where I tried more to conform and wore makeup and stuff, and I was more insecure about looks, and I had peer pressure and a lot of women would talk like that lady about themselves and others and I just did not like it at all. As I got more self-aware and confident, I just decided I wanted to be comfortable with myself and my body as it is. I thought– men dont have to do all this stuff to feel handsome, and we like them, so we should treat women like that too– and I am not going to "buy into" this form if beauty that they are selling to society right now. I am going to be myself and be comfortable and healthy and treat myself nicely and if others dont like it well that is their opinion but they need to be respectful toward me or I will not be their friends. I am going to love myself because I am freaking awesome. Plus I can save money and time not trying to doll-up like that, use that money for things like good food or entertainment, and I can attract others who like me for me this way too. I dont judge others who like to doll up, because each person can do what they like, and I know a lot of wonen like to. I just don't. But also I dont like them to tell me I am not beautuful, and if they do, I will tell them they are being disrespectful and walk away.

    Debbie, I am sorry your DH was inconsiderate. I dont know what he was thinking! Normally when you show soneone a pain they say "ouch, oh no" or sonething like that. 

    I can relate as far as to my son (and I expect grownups should know better but some clearly do not) but sometimes if Tommy says something rude, I tell him "that was kinda rude, you know sometimes you can think about another person's feelings BEFORE you talk, it is called checking yourself" or "– that kinda hurt my feelings, you could have said—–" or " you might think you are being honest but you are being rude, words should be both true and kind", and one of my favorites: "if you cant say something nice, dont say anything at all". 

    And Cynthia, yes I totally think people try to feel safe by living in a bubble of denial, or by "blaming the victims"- type thinking. If it is our fault then the world can stay safe for them. If it isnt true then the world can be safe for them. If it is OUR problem, then they dont have to change. But it slowly becomes apparent that no man is an island, that reality includes us and we arent crazy, that they have to make changes and considerations for us to help us or they will hinder us, that some of us are hit harder by things for no fault of our own, and that if we come together and show compassion, if we join the sane reality, if we help eachother follow our treatment plans, well that just makes it better for everyone in the long-run. 

     

  • Emelina

    Shea, I like how you think. I like natural beauty too. I gave up daily makeup before college. I notice guys didn’t have to get dolled up to go to work or school, so why should I have to? Plus I’m very no fuss, I like being able to roll out of bed, shower, put my hair up in a bun and go! 🤓 Sometimes I will put make up on for graduations, weddings, but not usually. 

    Another saying that I like regarding sayings … is it truthful, is it necessary, is it kind? If none of the above, then don’t say it!

  • Breatheeasy
    Emelina posted:

    Thank you Melissa, Lynn, Debbie and Shea. Hopefully as time goes on I’ll be better at being a duck and letting the unhelpful comments roll of my back. 

    I loved your entire response Shea. If I could, I’d print it out and frame it. I just hate it that not only do I have to be on guard against what’s going on in my body, and attentive to my meds, doctors, appointments, side effects and everything else asthma brings (oh yes, discrimination in the workplace) but also outsiders who want to run in and join the fun by making me feel ashamed for resting and not running around while ill? I should print my CT scan and plaster it to my forehead along with the shirt: no you are not house MD and I do not need fixing. Go away. 

    🤣 no you’re not house MD. Go away. Haha – that’s funny.

  • Breatheeasy

    I think of makeup as art. It’s fun. But I hardly have time for it now.

     I don’t use make up. There was one time I burnt my upper lip (it scabbed like I had a moustache) because I accidentally got hot food on it. It took a few months for it to return to normal and people didn’t make fun of it.  That was when I realised I don’t need to cover up and look perfect. It’s much easier being me. 

     

  • Emelina

    I found an article on Facebook from Teva about how to deal with people who don’t take asthma seriously. I liked this first response and take away. 

  • Emelina

    I saw this and think it’s appropriate. Just because you can’t see our illness, doesn’t make it less real or all in our heads

  • Deborah Bartlett

    Breatheeasy- The fool who said I would never let my skin look like that, hasn't got a clue….If she had eczema, she would know that you have no choice about what your skin looks like. When eczema flares, it looks a certain way. Mine leaves a reddish-purple scar as well. Plus, my elbows and knees are always bright red due to psoriasis. That doesn't make me a different person. Nor does it make you, or anyone else different. 

  • Deborah Bartlett

    Know what folks? The bottom line is….We cannot allow other people to take away our happiness and self confidence! Be proud if who you are! Focus on the positive things in each day! There is always a ray of sunshine behind each cloud! 🌞🌈😊💛

  • K8sMom2002
    Deborah Bartlett posted:

    Know what folks? The bottom line is….We cannot allow other people to take away our happiness and self confidence! Be proud if who you are! Focus on the positive things in each day! There is always a ray of sunshine behind each cloud! 🌞🌈😊💛

    Deborah, what a lovely reminder! It reminded me of a friend who quoted Eleanor Roosevelt to me — she actually had it printed out and put on her classroom door:

    The catch is … sometimes we give our consent before we even have a chance to think about it. 

    Em, I love, love, love your posts about what to say and the invisibility of some disorders. 

    And I love the way you guys have pointed out that guys don't have to get all dolled up! Helps me feel better when I have to greet the Fed Ex guy and I haven't put on any makeup — he hasn't, either! 

  • Shea

    Oooh Em I like both of those posts above! Educating is a great approach– ignorance is one of the big threats. Lack of compassion is another. 

    Some of these folks need a lesson in both. But it is not always up to only us to educate and teach compassion– it can be exhausting at times, so walking away or masking up or wearing a button to point to are always options as well. Grumbling aloud is a favorite of mine lol. I like to show a little emotion at times… Because holding it in can be tiring too. And when we are strong and up for it, educating is a great thing. It helps me knowing we all do that as we can and that we have organizations like aafa to help us too!

    Breatheasy, I am glad people were understanding of your burn– I wish theyd all be as unserstanding of asthma, allergies, and excema as with a burn or broken bone. I feel like for whatever reason they arent.

    Debbie is right about also loving ourselves, and being proud of ourselves as we are, and finding a positive– which sometimes we have to think about for a bit and consciously do as a practice– but is so important to do that! (For me it has been at least).

  • Emelina

    Found a new gem: “you should drink more water, your mouth and throat looks dry.” For the love of &$@?!”, please don’t tell an asthmatic patient on anticholinergic therapy to drink more water for dry mouth side effects. I could drink the Pacific Ocean and it wouldn’t help!

  • LK
    K8sMom2002 posted:

    It reminded me of a friend who quoted Eleanor Roosevelt to me — she actually had it printed out and put on her classroom door:

    The catch is … sometimes we give our consent before we even have a chance to think about it. 

     

    Cynthia, I understand what this quote is driving at but as hard as I try I still can't quite agree with it.  It's along the lines of "Sticks and stones will break my bones, but words will never hurt me"  .  

    While these sayings are catchy and on the surface seem true, I think they just don't hold water.  Of course, you are welcome to disagree with me!    I love a good discussion!  

    Words can make you feel inferior and they can hurt.  Words have meaning, whether it is to lift people up or to bring them down.  

    If words don't affect people, why do we give words of affirmation??  Why do we give words of encouragement??  

    One of my favorite Bible verses is Proverbs 15:1

    "A soft answer turns away wrath,    but a harsh word stirs up anger."  

    The only way I can see us never being hurt by words is if we keep our defenses up all the time and never let anyone get emotionally close to us.  That would be a sad state of affairs.  

    All of us say and do things that unintentionally or sometimes intentionally hurt others, even those close to us.  The best way to handle hurt is to forgive those who have hurt us.  That does not necessarily mean that we put ourselves back in the same hurtful situation but for our own sake we need to forgive others.  Holding on to grudges or chips on our shoulders harms us more than it harms them.

     

  • Breatheeasy
    Deborah Bartlett posted:

    Breatheeasy- The fool who said I would never let my skin look like that, hasn't got a clue….If she had eczema, she would know that you have no choice about what your skin looks like. When eczema flares, it looks a certain way. Mine leaves a reddish-purple scar as well. Plus, my elbows and knees are always bright red due to psoriasis. That doesn't make me a different person. Nor does it make you, or anyone else different. 

    🤣yeah I was laughing after what she said actually. 

  • Shea

    Lisa, I go over that issue to with that quote– part of me loves that quote because it puts power into your own hands. Sometimes people say something about you that is meant for you to grab onto, and sink you. And you do not have to grab onto it. You can just know that it is not true and watch it sink like a big rock in the water by itself– you dont jump on and grab onto it–  you stand safely where you are at.

    BUT– you can still be mad at that person for throwing that at you! Especially if their intent was to harm you and sink you. And THAT is the part that is hurtful. And it is tough to know what to do when that happens and how to react. I dont have the answer on that one. I guess just tellingvthe truth and saying "that isnt true and I dont like you saying things like that". Sometimes it wasnt intentionally said to hurt us but may be a repeat of something someone said to them once, that they couldnt defeat, so if we can defeat the thought behind the words, and respond with that, then it will protect us and sort of save that person too from those words.

    I like what you said, that we should try to use words that lift others up. They can hold power. 

    Spiderman popped into my head: "With great power comes great responsibility"!

     

     

  • LK
    Shea posted:

    Lisa, 

    BUT– you can still be mad at that person for throwing that at you! Especially if their intent was to harm you and sink you. And THAT is the part that is hurtful.

    Shea,  YES!  That is what I was trying to say!!  Thank you!  Glad you can decipher my thoughts and make them intelligible!!  

  • LK
     

    I like what you said, that we should try to use words that lift others up. They can hold power. 

    Spiderman popped into my head: "With great power comes great responsibility"!

    So true!  A similar verse in the Bible – Luke 12:48 King James Version - 

    "For unto whomsoever much is given, of him shall much be required"

  • Emelina

    Cynthia, Shea, Lisa, Debbie, 

    i love all of your thoughts and this conversation! It is very thought provoking. My take away has been a blend of all of your thoughts: remember I am beautiful the way I am. Words are words, as the receiver you can decide what to do with them – if truthful, honest, take them to heart, if cruel/hurtful let them go with your self esteem and dignity intact. As the speaker, your responsibility is to think before you speak. Ask yourself is it kind, necessary and true? Don’t propagate hurt, cruelty and evil with your words. Also as the receiver, you can choose if up to it, to discuss what was said if untrue and hurtful; but also you should do your own soul searching. Don’t let unkindness poison your soul – also be able to forgive (a hard thing to do when you’ve been injured, but an important part of healing).

    i love our discussions. So refreshing that we can discuss things openly here. If only the real world could do the same. 😍

  • LK

    Well said Em!  A good summation!  

    Emelina posted:

     

    i love our discussions. So refreshing that we can discuss things openly here. If only the real world could do the same. 😍

    Isn't that the truth!!  Just have civil discussions and listen to others' points of view and respond with your own points but debate with a civil tongue in your head.

  • Shea

    Em, you wrapped everything up so nicely above. And I am with you and Lisa, I also really appreciate the civil discussions we have here, and the compassionate mindfulness.

    Something popped into my head that we havent mentioned–and I cannot believe it wasnt the first thing I said when thus topic posted…. What I dread most of all in responses to anything I say with my asthma/allergues is NO RESPONSE AT ALL. It is the worst. They either act like they didn't hear or that you didn't say anything or that they cannot hear your wheeze or they just change the subject. I had that happen SO much in the beginning by the people around me and it had such a weird effect on me. Like… Do I not matter? Is this not real? Do I just ignore it too? And it got worse and worse. Then it was like… My ex laughed at ne as he was driving me to the ER and I couldnt get a breath in and I was wheezing so badly. Why is ge laughing at me? I am sitting in tb ER I might pass out, wht arent they calling me in? Coworkers would talk over the coughing and congestion and fatigue and just keep bothering me with more and more instead of taking it easier on me and helping me or acknowledging that something weird is hapoening to me. I might say something about it to my mom back in the day, and she would just start talking about something else completely like her shopping trip…. And I was like, isnt this more important why is sge ignoring me saying this? Once my ex just said nithung when I said look the cat allergies are really bad. My friend would hear me talking about allergies then later ask me to watch her cat while she was on a trip. I was so confused… I had no educated or supportive people to help guide me back then. Even my doctor rarely listened to me, and just prescribed prednisone boosts. I thought people cared about me, so I started thinking maybe this isnt real or maybe it isnt meaningful or that big of a deal. It is crazy to look back to where I started. I tried to ignore my symptoms until they were completely debilitating. And then when it did and I nearly died, it was like the biggest wake up call ever for me. I realized I had to take initiative, set boundaries, change, listen to myself more than anyone else, and leave bad situations no matter how hard it was. I found this group finally and it helps me from falling back into old patterns of avoidance or ignoring AND it helps me make connections between flares and triggers and know that it is real– not just because I feel it when others around me are not affected by it– but also it affects others too and there us a reason behind it. Any response can be good: "are you OK?", "can I help you?", "I know you have allergies/asthma, so I wont bring — around you", "I hear your struggle".

    So yes– the worse thing to say to a person with a chronic illness can often be– nothing at all.

  • LK

    Shea,  Wow.  Hadn't thought of that response either but you are so right!!  NO RESPONSE or totally ignoring us when we are having problems is the worst.

  • Deborah Bartlett

    One time, in the grocery store, a customer said to me…Oh yeah? Well, I smoked for 40 years, and I still smoke and I don't have COPD. I have news for him…not all people get COPD from smoking .And…he may end up with COPD, lung cancer, mouth cancer, or heart disease!!!

    One other time, a cashier said to me…You have asthma? Oh, too bad. 

    But, there have been times where there is no response to a coughing fit, or being tipsy, almost falling down. A simple…Do you need help? Or, are you okay? would have been appreciated!

  • Shea

    That is tough, Debbie– dealing with those types of responses. I try and think of what I do when I see others struggle or when someone shares a health issue or problem, or asks for an accomodation. I cant ever imagine responding how some people do to asthma. 

    Whether from strangers, acquaintances, coworkers, bosses, friends, or family, a good response is usually made up of acknowledging what you said/or the serious symptom that is happening, and showing compassion and care. 

    People can learn. I did tell my mom for instance, "it hurts my feelings when I tell you about something and you just ignore it and start talking about something like shopping or this or that–"– now she doesn't do that to me any more. I think it was a parenting strategy she had learned a long time ago about changing the subject when something is wrong to distract the kid.. I dont know but either way she doesn't typically do it to me anymore and I call her out if she does. When my ex ignored me and any discussions I finally set a firm boundary and ended up leaving. I switched to a better doctor. Friends who wouldn't show respect or care, I lost touch with. I made new friends. Family and friends who are willing definitely can be educated and great supports and they can learn from mistakes in communication and get better at it. 

  • Breatheeasy

    I had a big fight with my parents. I’m tired of them treating me with no respect. Everything they say now is targeted at my inability to be ‘normal’. Today I was invited to go sone place with DD by a friend. I told her I’m not well and so I will not be coming over. The main reason I said no is because they burn scented candles and incense at their home and it makes me short of breath. I told them about it before but they do it over and over again. So I decided to stop going there. 

    My mom goes “I’d take her to the play date if I didn’t have to cook.  You just keep being lazy – how is your DD ever going to be better?”

    well I take her out as much as I can so she socializes and has better speech. She has a speech delay.

    So I got very angry but I manage to keep my calm and say my asthma is not an excuse – I have no choice. I do everything for myself and I get very tired from running after my hyperactive kid and not going to the play date bothers you so much!?” She goes “I am a 50 something year old and I am fine. You talk like you are a 100 year old”. So I say I want to move out because she doesn’t understand me. And they say they won’t let me because my ex was abusive and they can’t let me live by myself. So I say I am very thankful for that but she needs to stop disrespecting my decisions and asthma. She just ignores that and goes into talking about how I got myself into this situation because I chose to be in an abusive relationship. Well I walked out of it and she has no idea what an abusive relationship is like. Just thinks it’s as easy as walking out because you had a fight on the first day. 

     

     

     

  • Deborah Bartlett

    I understand what you are saying, Breatheeasy. I have been in an abusive relationship. I think your Mom doesn't understand what you've been through, and what you are going through with your asthma. Best thing to do is to stay calm. Sit there and count to 10. That's what I do. 

    Sometimes if a person hasn't experienced something, they just don't get it. Hang in there! ☺

  • Breatheeasy
    Deborah Bartlett posted:

    I understand what you are saying, Breatheeasy. I have been in an abusive relationship. I think your Mom doesn't understand what you've been through, and what you are going through with your asthma. Best thing to do is to stay calm. Sit there and count to 10. That's what I do. 

    Sometimes if a person hasn't experienced something, they just don't get it. Hang in there! ☺

    Right.

    thanks. I’ll need to practice counting. 

     

    You’re up early!

  • Deborah Bartlett

    I got out of bed at 3! I have to run out of the house at 6:30 to do my shopping. DH has to go to work today. Rush-Rush-Rush!!!

    I'm here if you need me, Breatheeasy. ❤💜

  • Shea

    Ugh Breatheasy I would have been infuriated by those comments too! 

    When people blame me for my ex being a jerk I say "its not like I was turning down Mr. Rights left and right— the dating pool is NOT good out there" ….I also think, at least I have my child, and I will raise him to be respectful and keep good examples around who do not verbally abuse me or blame me for the limitations set by a medical issue, or for things outside my control– like other people. I will teach my child not to deny and ignore his or her issues or be around others who do that. And you are doung that–that is why you are staying home from the playdate. Laziness has nothing to do with that. And if those people want to meet in a better location, fine. But it is not lazy to take care of yourself, and it us good parenting to model that behavior.  

    My parents and I couldnt live together either. We tried but… It just was not working. They were still very much in denying my ussues and not willing to make changes to accomodate us. I moved out of state for a short period of time with a single mom friend of mine and my parents didnt like being far away from us either. My mom did not want to help much with watching my son because she had 4 kids and wanted to do her own thing– so school and work seemed like indebting situations and I wasnt comfortable with the childcare options and my health was out if control. I didnt want my mom to raise my son either– I wanted to– and I didnt want to work because my asthma was bad I was going to interviews trying to hide it and out of breath and knew I wouldnt make it like that. I had to apply for food stamps and medicaid and finally disability. My parents asked if Id come back to Florida if they got me a rental. We cane back. Eventually they got us this manufactured home, because I needed to live alone and needed a newer home with all my breathing issues and itd be a stable set up for life for us…. I had tried having a roommate with a different single mom friend who lives here in Florida and I had known a ling time when I had my rental, but she ended up not respecting the house rules and had a secret drug problem and it was tough getting her out and getting her to a safe place for recovery but her family helped me and she did get to a rehab and is stable in life now. But it was a bad experuence for me and tryst is hard for me since that and my ex had betrayed it and a home us so important. It is so tough.

    I would have lived with my parents had they wanted to live with us but they just didnt. And I dont want to live with people who dont want to live with me or who go out late or drink or do drugs or want to entertain others in the home. I alsi dint want to be with another man because I dont want more kids my health cannot take it and I cant trust others I have too much to lose. My home is like my only safe space in the world and one of the things I hold dearest (my son and my health are the others– and we all work together).

    Anyways I just say all that because I understand where you are at!…. I wish I could buy you a house! Hang in there and keep your boundaries up! 

     

  • Breatheeasy

    Thanks for agreeing with me and understanding my problems guys. I asked my parents a lot of times if I can get a place of my own. Right now they think my ex is going to cause issues for me if I live all by myself. So I said I’d move away from here. They asked me to  wait until I can manage taking care of DD all by myself. I am at my parents only coz I know DD can’t be left unattended. So I guess I’ll wait. 

  • Shea

    That sounds like a good plan. And it is nice to know that your parents are willing to help in the future and it is nice to have help there for now. Arguments are sure to happen when living with anyone, and working through them can help bring people closer– at least it has with my parents and I, so I think it'd be true for others too.

  • LK

    So DS and DGS came over.  DH is visiting his mom.  Guess DS just came over to talk to me about, in his words, my "anxiety".  That's all DS wanted to talk about.  I thought it was going to be a fun visit but it was anything but.    Tried to explain how with asthma you have to be on high alert for triggers and he kept saying that he thinks there are times when I don't need to be so, for example, I explained that I am not when I am in my car.  I have the air on recirculate and have my mask if I need that.  I tried to explain how with asthma you have to be alert all the time for potential triggers.  He just kept saying that he thinks I have more anxiety than I think I do.  I told him he would too if just a breath or two of a trigger could send him into a months-long flare.  Don't think he really understood. 

    To top if off a few days ago my dad called to ask, again, if I thought I should get a second opinion from another pulmonologist.  My dad and mom keep pushing the idea of Bronchial Thermoplasty.  I have discussed it with my pulmo and he has always said that he wants me to try the biologics first and if they don't help we will think about BT.  Someone they know suggested it once and it's always on their minds that that is what would fix my asthma.  Sigh.  

    Thought I was doing better, and I am, since being on Dupixent – no more nebs every 4 hours, no more pred, etc. and then to have all this just boggles my mind.  Just tired of having to defend my decisions.  I know they mean well but still I am doing everything I can.  

    Guess I should be grateful I wasn't still on pred and all the nebs when this came up or they really would have gotten an earful and I would have gone through more boxes of Kleenex!