NF type 1

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    Friends and Chronic Illness

    I'm just gonna say it. Maintaining friendships with a chronic illness is tough. It's even harder to make new friendships and meet people many times. There's a lot that goes into this: pain, anxiety, depression, and especially fatigue. Take your pick of symptoms. Having a chronic illness is exhausting. It helps to have people send a message checking in. Or just to talk about something random or that you, the person with chronic illness, is interested in. What's even harder sometimes is not knowing anyone else with your disease. I don't know anyone with Neurofibromatosis type 1. Or with chronic pain. I have family for support and I am very grateful for them. I always will be. Sometimes the support a friend can give is different and really helps. Anyways, just wanted to share some thoughts. Hope everyone is having a good day!

    #NFType1 #NF #NeurofibromatosisType1 #Neurofibromatosis #NFWarrior #ChronicPain #ChronicIllness

    14 people are talking about this
    Community Voices

    Tough time

    It's been a few weeks since I posted. I've been to the doctor's and need to see additional ones and have imaging on my tumors. Having a few new symptoms and more pain. It's frustrating and hard. I can't work right now but I was also told that I'd need a great lawyer to get on disability even though I have a genetic disorder causing bad chronic pain. I want to work and be productive but am having a really hard time with even getting going most days. I'm trying to stay positive but traumatic things from my past have reared their ugly head. And im struggling to sleep well. Also found out my dad has sarcoma. If anyone has advice on disability, pain relief, healing practices, or sleep practices please share. I'd truly appreciate it. Or even tell me something good. I'd honestly really just like to even talk about random stuff, too. Have good day everyone

    #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #NF #NF1 #Depression #Anxiety #ChronicIllness #ChronicPain #Tumors #braintumors

    3 people are talking about this
    Community Voices

    A tough day, a rest day

    Today is a tough day. Pain levels are high. Anxiety and depression are basically a roller coaster ride today. I've been struggling with my health lately and also got some bad news about my dad's health. Just a lot to process. Watching some movies today with a heatling pad (meds too) and just taking time to myself. What does everyone like to do on tough days?

    #ChronicIllness #ChronicPain #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #Depression #Anxiety

    3 people are talking about this
    Dyan Fox
    Dyan Fox @dyan-fox
    contributor

    When Others Pity Your Child With Neurofibromatosis

    To those who pity my daughter with neurofibromatosis, Dyan and her daughter. I hear your hushed voices when you don’t think I’m listening. I see you looking at my daughter with your sad stare. I hear the pity in your voice, and the things you say swarm inside my head. Aw, poor, sweet girl. What’s going to happen to her? So I want to tell you now – don’t pity my daughter. At four years old, she’s already more courageous than you and I combined. Don’t pity my daughter, who’s already smarter than me, and better at dealing with the cold, hard reality of life. Don’t think something’s wrong with her just because she looks different. Inside, where it counts, she’s a warrior. Don’t think she’s not going to have a good life, or she’ll somehow be at a disadvantage, because let me tell you, this girl’s going to take on the world. She’ll never believe she can’t do something, and she certainly won’t let anyone stand in her way. There’s only one thing that will slow her down, and that’s your hushed voices, and your sad stares. So put your pity away. Then stand back and watch her fly.