This topic contains 8 replies, has 5 voices, and was last updated by  Brittany Foster 6 months, 1 week ago.

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  • #14428
     Kathleen Sheffer 
    Keymaster

    Last night I went out to dinner with friends. The friend who knows me best, who visited me in the hospital before and after my transplant, texted me to say he would order for the group and asked if I had any dietary restrictions. Sounds nice, but…

    My first impulse was anger. Now that I take medications to suppress my immune system and to protect my transplanted heart and lungs, I have to take extra care with food safety. I do not share food. I have to avoid certain fruits, cheeses, and cannot have cold or undercooked meats. I thought my friend knew all this as I’ve been living with this for two years and have eaten several meals with him. I thought back to the other night when we were at a party and he kept offering me chips out of a bag that multiple people had eaten out of. Yuck. He really doesn’t get it.

    My second impulse was despair. Do I have to accept that some people just won’t get it? Ever? Maybe I am too self-centered, thinking my friends should keep all this information in their head. But then I think about my friends who have Celiac’s or who are vegetarian. I’m able to keep track of that!

    On the other hand, I do have some friends who are very aware of my health concerns and go above and beyond to make sure there’s something for me to eat at parties. It doesn’t seem dependent on age as I first hypothesized — I have some friends who are more than twice my age who don’t get it (will pick things off my plate with their fingers), and some my age (25) who do get it (set aside pre-packaged food for me).

    Anyway, this is not entirely related to PH (though I was careful with sharing food when I had PH because common colds turned into pneumonia), but it’s an issue I’m dealing with. Do you have friends who don’t understand your condition no matter how many times you explain it to them? Do you keep trying, or have you simply given up on educating them?

  • #14446
     VK 
    Participant

    Hi Kathleen,

    You mentioned the thing about diet so I have some non-PH related comments too, being diabetic. My best friend likes to cook up a storm but the storm ends up being entirely rice, potatoes, pasta, and bread because he’s vegetarian. Then I have to make him sad saying I can’t come over to have dinner with him (although I will go once in a while at the peril of hyperglycemia).

    Back in PH land, though, I think a worse problem is the existential one. How do we tell friends that we probably won’t live a (chronologically) full lifespan? My *close family* won’t even believe this one yet. Our lives are pretty extreme this way.

  • #14451
     Brittany Foster 
    Keymaster

    Hi Kathleen,
    this is such a good topic. It is hard for me to keep repeating things about my condition to my friends. I have just accepted the fact that there are friends who “get it” and others who simply don’t even after explaining things to them. This doesn’t necessarily mean that they aren’t a good friend or that you can’t have them in your life, it just means that for whatever reason, they are not sensitive to what your needs are. I find that I am always hyper aware of when my friends need something and always am the one to reach out to friends and ask if they need anything or help them with support. This is because I grew up with a condition where I needed this from others and didn’t always get it. So , when I am able to give this type of care to my friends, I do. I don’t always get the same care in return though and sometimes it’s simply because they don’t have those life experiences that I have had and they don’t “get it”. I have a few close friends and some of them battle their own type of illness whether it be physical or mental and these are always the friends who are more understanding of my needs and more in tune to my needs. I think you are doing the right thing by communicating what your needs are to your friends and you have every right to feel upset or let down when your needs aren’t listened to by the people that you care about. Maybe they didn’t realize this in the moment when it happened. I would talk about this with your friend that did this if they are an important part of your life and just let them know, “hey this really bothered me when …” and then if they continue to do it, maybe re-evaluate what type of friendship you want with that person. It’s tough for some of my friends too that I have been really close to. It seems like such a simple request to stay in and watch a movie and have a low key night , but when the focus is still on drinking and going out, it makes me feel like an outcast sometimes. I totally get where your feelings are coming from and I’m sorry you had to experience this. Not everyone reacts the way we would react if the roles were reversed. As I said before, we have been in situations in our life that makes us more sensitive to this and more sensitive to other’s needs. That’s a gift that my illness has given me. Empathy and sympathy go a long way!

  • #14501
     Vanessa Vaile 
    Participant

    I started talking with a few people at a time — mixed results so far except for two friends who are nurses (turns one is PH certified and worked 3 years in UNM University Hospital PH Center). Between next month and confirming the diagnosis, it’s definitely time for me to give the topic serious thought. Would handouts be bad form? Although a reading list was my first thought (resisting the temptation to add a quiz), I’ve bookmarked a few short video and visualizations.

    • #14504
       Brittany Foster 
      Keymaster

      Hi Vanessa,
      Talking about it openly and providing visuals of what is going on could be very helpful. As I have said in other posts similar to this topic, I would recommend bringing someone with you like a family member so they are able to hear from your doctors about how this condition effects you personally. Sometimes the handouts and online information can be very overwhelming. I would make sure that you are making sure information you give them pertains to you and what you’re dealing with. Maybe creating a list of what what be most helpful for you while you are going through this and what a bad day would look like for you vs a good day. Talk openly with them about what you feel your limitations are and what you CAN do comfortably. Write it all down to get your thoughts together beforehand so it doesn’t feel as overwhelming. I’m sure they will want to know how they can help you. Try to think about this. “Help” may look different for different friends or family members. For example, my mom is the one that accompanies me to appts and my dad helps by being there with gifts, food, my favorite dessert on a hard day, etc.

      • #14510
         VK 
        Participant

        Britt,

        These are great suggestions you gave Vanessa.

        Now I have mental images of us doing flipchart presentations of “hey folks, this is why we’re f***ed!”.

        Maybe not with those words. Though with my friends they’d probably need to see those words before it got into their thick heads. XD

      • #14521
         Brittany Foster 
        Keymaster

        VK,
        I can picture the flip chart. LOL!!! It’s like “here friends, take a seat. Here’s a powerpoint presentation and while you’re here take a list of “what is helpful vs what isn’t helpful” . But seriously though, chronic illness and a life threatening illness is difficult for friends to understand and it’s hard to explain it to people who just don’t want to hear it. It’s all so tough for sure! But we get by with the help of some humor !

  • #15148
     Stephannie Baker 
    Participant

    I guess I can relate a little but not entirely. I am a vegetarian and have been for a year and a half. My friends know the reason for me turning towards a plant-based diet. It is because of ethical issues. But they act ignorant many times and just randomly talk about chicken being yummy and missing non-veg food which is offensive to me as I do not stand for animal abuse and murder. And when I point this out to them they just take it as a joke. It can be infuriating cause me doing the same won’t be entertained cause then I will be blaming them for animal abuse. So yeah it gets on my nerves. But now i have vegetarian friends so I am happy

    • #15154
       Brittany Foster 
      Keymaster

      Hi Stephannie,
      It certainly can be hurtful when friends, especially ones that you wish would be at least supportive of you, take things as a joke. I’m glad that you found other friends who can support you in this way and who share this with you. As with health conditions, I find it hard with friends sometimes because there is only a small number of them who actually “get it” the others just try their best to show sympathy but the empathy is usually what is lacking.

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