i know it’s christmas time so talking about things that aren’t positive makes people sad. i’ve been unwell basically my whole life so i don’t get to have a break from thinking about it and experiencing it. some days are worse than others.
i’ve heard all the treatment options and i know that there are people who can overcome a lot of it.
most of it doesn’t seem to be working a great deal for me… all i want is to not have to take anymore treatment, and my family really are struggling to accept that.
i hate hearing that i’m young and that there are other options out there, it gets really tiring. even with treatment options, it just prolongs things. doesn’t cure it.
i feel like every time i tell people what i have they have “answers” which is why i’m not mentioning it.
and i also know people tell me to join support groups for this specific disease, but sometimes it’s nice to talk to people who don’t want to shove all the “right” things in my face.
Hello. Nice to meet you. I hope you feel loved by this community. It is okay what you are feeling. You just wanted someone to listen to you. You don’t want to hear the same old advices or suggestions. There is nothing wrong with those. Your loved ones have good intentions. However, they got to put their other things aside and give you a time a day to vent. It is okay they don’t understand you. Their job is to be there with you and for you because they love you. Love them back too. Also, love yourself. Thank you for sharing your story. God loves you.
Thanks so much. I know they love me and I totally know they don’t want to think about me dying. I’m not suicidal or anything, it’s just agony working so hard to stay alive.
I fully appreciate everything they’ve done for me, I just want them to be happy and to be happy to spend time with me and not worry about everything.
Hey @cohen,
Thank you so much for being here. 
It makes sense to feel overwhelmed by what you’re going through, but also by others comments, recommendations, advices of all kind. People who love us just want the best for us, and when it’s about our health it often means that they want us to try as many treatments as possible. It’s an attempt to gain some control, also to keep hope. But going from one treatment to another is exhausting. Sometimes we just want people to be there for us, to listen and understand, but not to suggest solutions or to try “fix” a situation.
If you want to share a little more about this battle you’re facing, you’re more than welcome to do it here. You are allowed to share what’s on your heart without having to be afraid of receiving unwanted advices or being misunderstood. This community can be an ear to listen, without any judgment.
Also, do you feel like this is something you could actually discuss with your loved ones? To be vulnerable with them and explain that, sometimes, what you need might be a little bit different than what they’re trying to do. There might be a way to communicate differently, for you and your loved ones to have room for both your emotions, but without one that would overshadow the other. Like a teamwork. It is obvious, through the words you use, that there is a huge amount of love on both ends. It can lift mountains.
I know they want do to the best by me and I’ll always be thankful for that.
I have CF so I have a lot of trouble breathing and often get pneumonia/lung infections.
I find it hard to eat or don’t feel like it so I’ve had a few feeding tubes in. I’ve built up immunities to different antibiotics so they’re not as effective.
Lots of hospital stays.
It’s not all bad, I have a lot I am thankful for.
I tried once before to talk to my family about stopping taking all the medications and looking into the more invasive treatments and they weren’t ready to hear it. Usually it’s brushed off as I’m just tired or had a bad day. I don’t want to live the rest of my life focused on what I have to do to stay alive, I’d rather have a little more freedom and enjoy people around me.
Thank you @cohen for sharing a little more about your situation. It’s good to learn to know you better! 
I’m familiar with CF and can understand why it’s exhausting in the long run. Even just for the impact it has on your body. I hear that you’ve been doing a lot to keep moving on and taking care of yourself. Your efforts are seen and acknowledged, friend.
I also imagine that all of this takes a lot of space in your life, so I want to ask, who are you besides all of this? What are the things in this world that bring you some joy?
I tried once before to talk to my family about stopping taking all the medications and looking into the more invasive treatments and they weren’t ready to hear it. Usually it’s brushed off as I’m just tired or had a bad day. I don’t want to live the rest of my life focused on what I have to do to stay alive, I’d rather have a little more freedom and enjoy people around me.
Yea, it really makes sense to feel that way. And as you said, your family reaction is understandable. You’re right by saying that they probably weren’t ready to hear what you have to say. It’s still a first step to break the ice, and I’m proud of you for doing it. This is about your life, about you. You have a voice to share that deserves to be heard. I deeply believe that there’s always room for everyone’s voice in such situation. But it’s scary to talk about those things. Everyone is afraid to make others sad, and it can become a vicious cycle where communication is avoided.
Are those invasive treatments something that you’ve been able to discuss with your doctor(s)? I imagine that, if you trust them enough, they could help you navigate those kind of conversations with your family.
PS - I hope your holidays are going well and are a good opportunity for connection with the people you love. 
I’ve never really spent time wondering who I am as a person and what I’m meant to be doing because I never felt like I was going to be here long or I was too focused on hospital stays or something like that.
I know I enjoy being with people. I haven’t got a lot of friends, but I still enjoy being around my brother and sister and their friends.
I’d like to do more cliche sounding things like go to the beach or sit in a park and have a picnic. It’s all simple, but it takes a lot of energy too.
I know I need to definitely talk to them again and hopefully it’ll be easier this time around.
Thank you for your encouragement and for listening.
It’s New Year’s Day officially and I managed to stay awake and stay up with some friends. I know it’s going to be a little bit of a struggle during the day tomorrow, but I am so happy to be here now. Alive and enjoying life. Good night and happy New Year!
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