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  • When Your Illness Makes you Feel Unreliable

    Posted by brittany-foster on June 11, 2019 at 10:54 am

    The last 6 months have been anything but easy on my relationships with my family, boyfriend, and friends. When my health leaves me in bed most of the day or when it starts to feel like I’m in the hospital more times than I’m out of it, I get worried. I get worried about losing relationships in my life because I’m missing out on so much. It’s hard to plan vacations, trips, or even just plan for a fun thing to do the next day or on the weekend.

    It is easy to notice when others are getting frustrated with the state of my health and the unpredictable nature of things. Unfortunately, for me, that’s life right now. It takes strong people to bare the burdens and emotional toll that illness takes. Seeing the impact this toll has on my relationships is one of the hardest things to witness. Even though I may be in the hospital more times than out of it recently, everyone else’s life does go on. It’s hard to take a back seat to that.

    To watch as others do things I wish I could be doing or to not take part in things because of my health, makes me question my worth in relationships and makes me wonder what it is that I bring to the table.

    Do you ever find yourself really feeling unreliable or upset that your condition can be so unpredictable? How do others deal with this unpredictability of your condition and state of health? Do you notice the toll this takes on relationships with a significant other, family, or friends? How do you get the message across that this is simply something you can’t control?

    jen-cueva replied 2 months ago 3 Members · 13 Replies
  • 13 Replies
  • Colleen

    Member
    June 11, 2019 at 11:53 am

    Brittany, I felt so emotional reading your post because I can relate. I’ve seen my son go through this and honestly, as caregiver I have experienced this to a certain degree too. My son would get upset hearing his friends and brother share what they where up to while he was in the hospital and it was hurtful. The perspective I eventually came to that I shared with him is that they weren’t keeping him updated to hurt him, but to include him. People have to keep up with life outside of the hospital but they are thinking of you, a lot! They wish you where with them but they also want more than anything for you to take care of yourself so that you can get better and come home.

    I’m sure you bring a lot to the table. I know gathering from what you share on the forums, that you are very compassionate, intelligent and have a great sense of humor. People are drawn to someone like you and when you’re not around, I bet you are greatly missed. Because you feel self-conscious about the unpredictability of your health, maybe the frustration you are seeing in your loved ones is more concern.

    That being said I do understand that sometimes there are certain areas of your personal life that might really take a hit from all the ups and downs. I have another son who is healthy and a year younger than his brother who had PH. He always tried to be understanding but there where times when it was obvious that he was frustrated by not having his mom and brother around because they where at the hospital or other medical appointments. I tried so hard to maintain balance but it often wasn’t easy. It’s not fair but it’s the reality of living with PH.

    I don’t know if anything I’ve said has helped but at least know that you’re not alone and that others have experienced this.

    • jen-cueva

      Member
      June 11, 2019 at 3:35 pm

      Well said, Colleen!

      Great big hugs to you as well. Thanks for sharing your perspectives from a caregiver’s view, it helps me to understand things better.

    • brittany-foster

      Member
      June 11, 2019 at 5:04 pm

      Colleen,
      What you said really helped me a lot. Thank you for sharing all of that personal information. I have also experienced these feelings with my siblings and I’m sure that my sisters have had the hurt of not having my mom and I around. I know sometimes it’s hard for them to get it. But, I find that it is always good to reach out to your loved to ones and let them know that you understand if they are going through difficulty and that even though you’re not there physically, you can be there emotionally. All work we do for ourselves as patients is hard, really difficult emotional and physical work. It requires much of our energy and thought process and doesn’t leave a lot of room for the things we enjoy, unfortunately. This does help me to appreciate the days that I DO have with my family and friends and boyfriend and makes those moments all the more special.

      • jen-cueva

        Member
        June 11, 2019 at 8:49 pm

        Well said, Brittany, I think even though my sisters and I are adults, it seems that I talk to my mom the most and often she comes here when I’m in the hospital, etc.. I feel like at these times, my sisters feel like maybe it’s not fair because they aren’t getting mom they me. That may not be how they feel, maybe just my thinking. You know we tend to beat ourselves up.

        I’m so grateful for any family time that I can get !

        Colleen, how did you balance that tine between your sons?

      • Colleen

        Member
        June 11, 2019 at 11:19 pm

        Jen, balancing the time wasn’t easy and honestly, sometimes impossible when my PH’er was having serious issues. I would try to make sure I called his brother at least once a day to check in on him. My husband had the ability to work from home, which was very valuable so that at least one parent was always there. What we tried to do is have a mom and son/ dad and son day once a month. We traded off each boy so that they both got to do something special with just mom or dad every now and then. They have fond memories of this and as young adults, it’s come up recently that they would actually like to start it back up again. I said special but it often was something as simple as going to the movies and dinner together.

      • brittany-foster

        Member
        June 12, 2019 at 7:23 am

        Jen,
        I have 2 younger sisters that are close in age to me. One is going to be 27 and the other one is 23. It is definitely hard for them when my mom is away, especially my 27 year old sister who has an almost 5 year old (my nephew) at home. My mom helps out with him too and allows her to have some free time to go to the gym or do what she needs to do. I know it’s hard when she’s away and taking care of things with me especially because so much of her attention and so much of the conversation revolves around my health and how I’m doing. She does always check in with them by either calls or text messages and makes sure to ask them about their day. Before my surgery my mom took my sister to get her nails done and have a spa day with her. Doing these little things really do make a difference so the other family members know that even though your mom’s time is taken up a lot, they still love their family and do all they can.

  • jen-cueva

    Member
    June 11, 2019 at 3:34 pm

    First off , Brittany, you’re not alone!

    You have been through so much in these last months with your health. I can’t even begin to imagine the emotional roller coaster you’ve been dealing with. I agree that illnesses in general can take a huge toll-on our relationships.

    I often question myself , wondering if I’m enough, if I’m doing enough, and often I do feel unreliable. I’m no longer working, my heath is unpredictable, and I do see my loved ones struggling as they watch me . They do get frustrated, but I think it’s because they love me so much and they worry too!

    I find that these feelings for me, are worse on my worst days. I think it’s probably the worst for my loved ones too. It’s not something we can control, and I think our loved ones know this and understand more than we think. It doesn’t make it any easier for us, we continue to question things and start to worry if we are enough, if we are “ doing our part”.

    From what I know about you , I think you’re an amazing, smart, strong, beautiful, and caring young woman. Funny, too! I am sure your loved ones see those things too, and so much more. Please try and be gentle with yourself and remember all of the things that you’ve been through. Great big hugs to you as it breaks my heart to read that you’re having these feelings. Just know, you’re not alone, you are enough, and you are loved!

    • Colleen

      Member
      June 11, 2019 at 4:52 pm

      Jen, I hear what you and Brittany are saying and I understand, but it makes me so sad that two such beautiful and amazing women have to deal with these feelings of needing to more than you already are. I have no doubt that you are both so loved by your family and friends but I can imagine how the challenges of staying physically well can toy with your self-confidence and emotions. When these feelings become overwhelming do you address them with your family and loved ones?

      • brittany-foster

        Member
        June 11, 2019 at 5:06 pm

        I do address these feelings of feeling inadequate and not enough or feeling especially vulnerable and my lack of confidence that can come across sometimes as jealousy. I have been better at trying to talk through these feelings when I’m experiencing them vs holding it all in and pretending like everything is going okay . I know when relationships hit a rough spot in life and the hard part is bringing this up and hoping the other person understands.

      • jen-cueva

        Member
        June 11, 2019 at 8:45 pm

        Thanks for such kind words and support, Colleen! I think I am better with this issue, but still have these days. I will bring these feelings up some days, others I get “ feisty “ and my hubby and daughter both know something is up. I’m working on this with my therapist, too! It seems , I’m just an overall work in progress.

        Brittany, thanks and no need to apologize. Like yourself, I WAS the caregiver amongst my family and friends. I was and still someone that they rely on at certain times, but I often feel I’m unreliable and inadequate l I’ve always had a big heart ( yes, really do now, hehe) and I often feel guilty that I am not able to be that sane , reliable person I once was due to my health. I often have “ jealousy “ it seems but more so it’s the missing out on things and the guilt that is the toughest for me.

        I’m so grateful for a loving and supportive hubby and family.

      • brittany-foster

        Member
        June 12, 2019 at 7:04 am

        Jen,
        That really must make a world of difference to have those you are close to be so supportive and reassuring, although I am sure they have their moments too and they ARE entitled to it. It’s hard to see the frustration and sadness it can bring to others because it feels like I am a large part of their source of pain. But them NOT feeling emotional and upset would be more worrisome, it shows their level of care and compassion. I’m glad that you are getting the right support and I know you know we are always there for you too through all of this. It certainly is hard when so many parts of what makes you “you” are taken away or are not able to be shown all the time. I was always the one in my group who would be smiling and laughing constantly, now some days my smile is just simply forced and that hurts a lot to not have that genuine good time. hopefully there will be better times and enjoyable times ahead for both of us ! Until then, all we can do is keep trying.

    • brittany-foster

      Member
      June 11, 2019 at 5:24 pm

      Jen ,
      I’m sorry that you are struggling with some of this too. I think that it’s always so hard because our illnesses really are unpredictable and it often makes us seem like WE are the ones that are unreliable. One of my best values about myself was that I was always one that my friends and family counted on and could rely on. Now, it feels hard because when I am fighting and really struggling with my health, my self worth gets very clouded and it’s hard to see others that are relying me being let down time and time again. Whether it’ a cancelled plan with my sister last minute or a vacation or trip that I’m unable to go on. I just wish I had more of a break in between difficulty. It’s scary to have good times too and know that there will also be the bad. Sometimes that’s a hard thought too and can put a damper on a good moment. In the better moments though I try to be present and one of my goals for myself is to limit talk about my illness and my condition because when I’m out of the hospital, I don’t want things to be about that. Do you know what I mean ?

  • jen-cueva

    Member
    January 26, 2024 at 1:23 pm

    This topic has many wonderful conversations that serve as reminders, especially for those who feel inadequate or weak. In my latest column, I delve into this topic and remind readers that they are never alone in their journey.

    In my recent column, I delve into this topic; you can’t miss it! Just click on the link below and give it a read. Afterward, let’s talk about this! I can’t wait to hear your thoughts!

    https://pulmonaryhypertensionnews.com/columns/are-you-feeling-inadequate-ph-youre-not-alone

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