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When other people are sick

Discussion in 'Relationships and coping' started by Haveyoutriedyoga, Apr 23, 2022.

  1. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

    Messages:
    345
    How do you react when people around you are short-term unwell with a virus or something?

    I feel bitter towards people who dont in some way acknowledge how hard it is having symptoms every day with no end in sight, and then when they get a virus or something, if they express their suffering 'a lot' (based on my judgement) I don't feel like running around to help them and I don't feel like reacting to their expressions with sympathy.

    I also know that it's so hard to know what it's like being ill every day forever, without experiencing it.

    I always end up posting these sorts of questions when saying with family
     
  2. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

    Messages:
    236
    Hi, yea this can be really tough can't it. I can find it very frustrating when someone around me is making a big deal out of being ill with something temporary, and it can feel like there's a strange expectation that pwME should 'be used to it' or something like that. I think I've come to the conclusion that people who aren't experiencing it simply can't know what it's like to experience it, and I've made some kind of peace with it, even though I still find it frustrating.

    In terms of how I actually react - I usually try to take myself out of it and just be as sympathetic and empathetic as possible - partly because I find it can be a temporary relief from obsessing over how awful I feel, and partly because in general I do want to be as supportive as I can, within my capacity, to people I'm close to. And also possibly party from a slightly less well-intentioned place of wondering if me being very empathetic and sympathetic and supportive towards the other person might spur them to reflect on how they respond to my condition.

    I think also, I've realised that someone being very expressively / performatively sympathetic or 'understanding' of my illness, while it definitely makes things easier, doesn't actually fundamentally improve my health! Obviously my friends & family can do things to help, but they can't actually solve the physiological problem (as far as I can tell). So while it may sound a bit bleak, for me the knowledge that my friends and family can't really do anything to help, most of the time, makes it a bit easier for me to not hold on to frustration at them for not always acting how I'd want them to..

    If that makes sense..!
     
  3. Lilas

    Lilas Senior Member (Voting Rights)

    Messages:
    364
    Location:
    Canada
    I'm sorry you had to put up with this. It hurts not to be understood and it doesn't inspire compassion for these people either. Personally, I am lucky to have relatives who generally "understand", even if sometimes I have to repeat because they forget a little. If I feel that my limits are not respected, I express it clearly to the person and it happened to me in the past to even move away from the person for a time. In fact, if I had had friends or acquaintances who really didn't want to understand, I think they would simply no longer be part of my life (no energy to waste unnecessarily).

    In short, it is not perfect because it is almost impossible for a healthy person to fully understand the state of a pwme, except perhaps for people who are able to really listen and who have deep empathy : to listen and believe the person.
     
  4. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,369
    Location:
    Budapest, Hungary
    I feel you. I think my family still treats me and my disease relatively well, compared to some of the stories I saw in my own ME/CFS group. They never disbelieved me for example or told me to just get myself together or thought the problem to be psychological.

    But it doesn't really go beyond that. Their attitude is mostly "yes, yes, we understand, you are ill and cannot exert yourself too much". So in words it is fine, but their actions tell a different story. They tell me to do things that are important and must be done right now, even though they are not actually that important. And I told them a million times not to expect me to just jump up to do things they ask from me last minute, without any prior warning, because that is very difficult for me, especially if I have a bad day. I need to be able to do things on my own schedule and it is the disease that dictates it, not me or anyone else. But it also took them a long time to understand that I also cannot make definite plans far ahead in time because I have no idea how I'll feel.

    The other thing is that I usually tell them when I have a bad day so they know. I tell my mom not to stress me on those days and also not to talk for very long to me (on the phone) because my cognitive bandwidth is really tiny and it only takes a minute or so for my brain to feel it is melting down on those days. Especially not to tell me important things I'm supposed to remember because I'll probably remember very little of those. I usually tell her to always send me the important things in an email.

    All these instructions get ignored routinely unfortunately. There have been multiple instances when I told my mom if she ignores my requests like this, especially on my bad days, I'll just won't talk to her after a while because I don't really have a choice if I want to preserve my health and sanity. It is really horrible for me when I say "mom, I cannot pay attention anymore, my brain is not capable of more, please stop talking". And then she just keeps going and going and I just hang up because what else can I do.

    But to answer your question: the fact that my family can actually pay attention to these things became obvious to me when my sister was trying to conceive artificially and was taking some medication for this. She told us not to stress her at all because it can be very dangerous and I remember she told me this starting with "just so you understand" and I remember how bad that felt. I mean my whole life has been like this for years, I've explained it to them many times, sent them videos about the "battery" analogy etc. And it was still me somehow who this needed to be explained to.

    And my family really took it seriously in her case, a lot more than in mine and tried to make her life as stress/exertion-free as possible. And I was still in the same "yes, she is ill but she can also endure these things" box. That was hard to take. So I do think that unless you have a family who has an extremely good understanding of the disease (which they may not even if they have the best intentions), then it is mostly the community, other pwME who will give you support.
     
  5. Lilas

    Lilas Senior Member (Voting Rights)

    Messages:
    364
    Location:
    Canada
    Oh @Wyva... :(

    Absolutely. :heart:
     
  6. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

    Messages:
    345
    One issue with this disease is that it severs the ability to genuinely relate to one another and isolates you because of that, and this feels like a stark example, unless you are very skillfully able to use the situation to help others relate to your everyday experiences.

    It also forces existing difficulties which many family's and friendships have (eg over caring for one another when sick or something else entirely) into the foreground, when they might have been more manageable or less destructive if allowed to remain unexamined or addressed at a different pace. PwME are then forced into dealing with these issues head on without resources to do it well and without stamina to manage the fallout.

    Currently struggling with being extra sick, family member being sick with the same bug, not getting the support I generally need let alone need right now, not being listened to, flashbacks to being ill and told off for it in childhood, household environment too noisy and cold for a regular day let alone when extra sick. All rooted in relationships where my needs have always been second, and being in this state pushes everything right up to the surface.

    Eta: eg
     
    Last edited: Apr 24, 2022
    alktipping, Lilas, Binkie4 and 6 others like this.
  7. Leila

    Leila Senior Member (Voting Rights)

    Messages:
    1,157
    My empathy for someone being sick with a virus etc. depends a lot on how they have shown empathy towards me.

    So if it's someone that had shown empathy towards me in the past I'm totally fine with them complaining and suffering "loudly". I do what I can to help. Being sick sucks. I do know.

    If they had dismissed me, I still of course help if I can and needed, but I'm not willing to talk about their suffering so much in that moment. Or rather, I try to change the subject, leave the room or something.

    That's not very selfless, true empathy would go without that kind of tit for tat, but I think it's normal.

    It's similar to when people show me pictures from their holiday. If there's mutual care for each other I feel happy for them and it feels like I'm taking part in their Life. If there is no mutual care I mostly feel envy.
     
    Lilas, Binkie4, Trish and 5 others like this.

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