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    • #11867
      Brittany Foster
      Keymaster

      I used to be timid to ask for help. I always thought I could do it on my own and just “tough it out”. Not asking for help was more of a burden and added emotional stress to my life. Now that I have been utilizing my support systems the past few years, it has made living with this illness more manageable.

      My support system includes my family, closest friends, boyfriend, medical team, therapist, and social media support groups.

      Each of these groups provides different levels of emotional support. I am comfortable enough with the people I choose to be a part of my support systems to make them aware of how I’m feeling. Not only do they provide me with emotional support, but they give me physical support when needed and always push me to be the best version of myself.

      Support groups online through social media is a whole new type of support. Since becoming a column writer and forum moderator, I have benefited from talking with others who truly understand. Before social media groups, I received a lot of sympathy, but I now am lucky enough to have found people who can empathize.

      Who is part of your support system? What types of support do you receive from them? How do you benefit from social media groups and being a part of a forum?

    • #11894
      Beverly Repouille
      Participant

      You have nailed it right on the head for me! I especially love this group. There is such positive interaction an support here. I belong to a specialized group on Facebook that I am about ready to leave. They are very supportive but talk about a surgery that I will probably not be able to have. Sometimes this depresses and frustrates me – both emotions I don’t need to entertain right now. And my best girlfriend is more into very aggressively encouraging me to get healthy and chewing me out when I don’t make appropriate choices. I know she loves me, but once again I don’t need the emotions her “support” brings up.

      • #12653
        Brittany Foster
        Keymaster

        Hi Beverly,
        Sorry for the delay response. Usually I get back to you sooner! I’m glad that you find this group supportive and that this is a safe space for you to talk about how you are feeling without judgment. That’s the best kind of support and support from those who understand what it is like managing this. I think that sometimes my friends and those who are close to me can get frustrated when I have to miss things and just make assumptions about my health based on how I look or how I was feeling a few hours prior. It’s hard to get them to understand that our bodies change and how we are feeling can change pretty suddenly.

    • #12645
      Chris LaRose Mev
      Participant

      i have very little physical support; my daughter does my laundry and makes my bed, but that’s about it. i have no actual friends; i’m alone.

      • #12652
        Brittany Foster
        Keymaster

        Hi Chris,
        I’m glad that you have a community of PHriends here! Consider us part of your support system. It’s the best kind of support when people actually can relate and understand on a personal level.

    • #12931
      KRISTINE
      Participant

      Yes, I too have no physical support system. I just had a falling out with my family 2 weeks ago, which I never thought would happen. I am very appreciative of the support I find in this forum, and I don’t do Social Media/facebook. My friends are just at a distance meaning I don’t have any real close friends, and in my opinion they are of the mindset that I look o.k. so I must be o.k.. One friend even went so far as to say that I never had a problem till the Dr. gave me a diagnosis. That just goes to show that particular friend doesn’t pay a lot of attention to what I’ve been going through. Which is o.k., everybody has issues in life, but I wish people wouldn’t make statements like what she said to me, when they haven’t been present enough to have enough knowledge to back up a statement like “I never had a problem till the Dr. gave me a diagnosis”. O.K. I’m over it. My dogs are actually a hell of a support system to be quite honest with you.

      • #12940
        Brittany Foster
        Keymaster

        Hi Kristine,
        I am sorry that there was a falling out. Coming from a big family, I know that when there is some type of falling out or drama, it can feel so isolating! I hate that there has to be so much drama with families like that. As if what we are managing every day isn’t hard enough. I am glad that you are able to find some support from this forum. This is why I think online communities can be so beneficial !

        I have had people make that exact same comment. I have even heard something along the lines of “if you don’t go looking for problems, you won’t have any” or have had ignorant family or friends tell me “maybe you shouldn’t go to the doctors as much”. If they only knew how I wish I could take a break from my own reality and avoid doctors and hospitals. But that would just be a risk to my health.

        The ignornace of some people just leaves me feeling sorry for them and also a little envious because clearly they haven’t gone through anything like this.

        I also find comfort in my pets and I’m glad you have a dog to keep you company and provide support ! I know there are many others who love the company of their pets. My nephew just got a kitten and it is actually sitting on my lap as I write this (although I am slightly allergic to cats so I’ll just sit here and wait for the itchy eyes hahaha!)

    • #12949
      VK
      Participant

      For the most part — I have me, myself, and I.

      My partner is younger than I am and pretty insecure about her life so 90% of the support between us is from me to her. I’m not upset about that because I need to exercise my duty to help someone like her achieve her best in life especially because her life wasn’t that rosy either. Her, my old friends from school, and my co-workers provide the only social support I have right now.

      I don’t let my parents provide significant support because they don’t readily accept my illness as fact and are unwilling to accept that most of the cause (bone disease leading to thoracic restriction leading to PH) is genetic – especially the fact they passed on to me a life limiting disease. They still think I owe them a beautiful extended family and a paid retirement in exchange for the privilege of life they gave me. LOL. Riiiight.

      • #12954
        Brittany Foster
        Keymaster

        Hi VK,
        I’m glad that you are able to have self support, but it’s hard when it’s difficult to rely on others when you need them too. I hope that your partner is able to provide support and meet you the rest of the way when you are sick and unable to give them more of yourself. That has always been a struggle for me and something i have needed to be very clear with in my own relationship. Expectations needed to be established when it came down to what to do when I wasn’t able to be there the way I usually am and “picking up the slack”. It seems like you are able to support your partner even with the condition that you have. Feeling as if you are doing something is definitely a good thing and also is something that I like to hold onto.

        That sounds hard that your family is difficult with accepting your condition. Have they gone to appointments with you? Sometimes that helps my siblings when they actually hear things from the doctor and realize what it is that I am living with an managing every day. They know it’s not easy but sometimes it can be hard for them to understand.

        You always have support here too! 🙂

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