Whats the best way?
Is it to talk to my friend or my partner or mom/dad? Or just keep it to myself? I am not sure talking with them will help because they won’t ever understand or empathise how I feel. It feels very lonely at times. This also impacts my behaviour, reaction and response.
No one in my family really understands what I'm going through. They feel for me but they're also not really interested in talking about it. My oldest daughter felt compelled to get a physical after I was diagnosed and that saved her life so the NMO was a blessing in disguise but she didn't talk about that much. She listens to me but she has very little to say so I've stopped talking about it for the most part. I think my twin sister is worried that it might happen to her and chooses to ignore what's going on with me. Other significant people in my family are really just focused on themselves. I haven't told anyone outside my family aside from my old boss and I retired shortly after that.
It's an awful disease that probably scares people and they just don't want to hear about it plus I guess they don't really know what to say. When my mother had multiple myeloma and would go on about her bowel problems I know I didn't want to hear that stuff and I’d change the subject. I don't talk about anything like that as that's not an issue for me but I just think it's uncomfortable for many people to hear about symptoms that they can't relate to.
What I do is keep a journal and that helps. I’m a Christian so I can always talk to God, give all my burdens to Him, and that helps me immensely. I'm also a solitary person so I don't usually feel lonely and I'm a happy person by nature so I don't get depressed but again I think that's due to my Christianity and my belief in Jesus Christ. Maybe this site could be helpful for you, asking questions, sharing info, and especially your story. I don't know if any of the things that I do would be helpful to you but I truly hope you find a way to not feel lonely.
Hi! This is a post I can sympathize with very much. Unfortunately, I have lost family members lost being a loose term from my Illness. Nobody really understood and because I didn’t have cancer nobody wanted to understand they thought medication would make me better. i’m actually currently in a situation where I was living with a family member because they didn’t understand the extent of my illness. They asked us to leave I am not, but then I have people like my mom who will take all day to understand what it is that I go through, what you share is at your discretion.
It really depends on who the person is and what’s their sympathy like outside of you being diagnosed I think you definitely need to talk to your partner since you are doing life with them but for everybody else that’s not super close to you you share what you’re comfortable sharing if they are interested and want to learn more or help you in any kind of way that’s when you can give them more details.
I know how hard it is. I’m only a message away if you ever need help.
Lean in to your community and faith, we understand and see you!
I understand where you are coming from, and really it's not easy. And I agree with . See the disease is still new, my personal observation, no matter what part of the world people won't understand, they would judge us, give suggestions on what to take and some would even mock us which further makes us feel lonely cause it's our journey at the end of the day.
My friends suddenly vanished my relationship came into shambles.
I started to love myself, started doing what I love most, and most of all I stopped caring. I know it's hard to say but sometimes you have to do it for your own sake. Meditating listening to music anything and everything.
And also do not forget we as a community are all here for you.
Please take care. Noor (Team Member)Hey friend, I can understand your feelings. But I think you need to talk to anyone about this. Take your time and reveal your feeling to anyone close.
