This topic contains 2 replies, has 2 voices, and was last updated by  William 6 months, 1 week ago.

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  • #11159
     William 
    Participant

    What are some important issues for you as a person with CF? For those of you in the US, is it insurance coverage? Prices for medicine? Perception among peers? And for those not in the US, please educate myself and others about the issues you face in your county?

  • #11161
     Luisa Palazola 
    Keymaster

    For me and the issues I’ve had with cf, I think mental health is a HUGE and frequent discussion that we need to have with our care teams. Honestly, I think mental health within chronic illness in general has been overlooked for the longest time. And from my experience, I don’t think it’s a topic/issue many therapists are even trained on dealing with. I wish the CFF would put more funding into developing perhaps a protocol/tools for therapy in CF or chronic illness.

    What would that look like? I honestly don’t know. I think a huge influence on me and reason why I’ve gone through bouts of depression and severe anxiety, is because I have an idea (granted, purely false) of what life is “supposed to look like.” But, CF or not, this normalized idea of the right path, is garbage. There are going to be hurdles, and having CF they’re way more apparent. But, that doesn’t quite diminish your quality of life, it just hurls you onto a different path, I guess your path.

  • #11190
     William 
    Participant

    I think that mental health is severely overlooked by the foundation and I’m not totally sure that that’s their fault. At the end of the day, their focus is on trying to cure the disease. However, it would be nice for them maybe have a partnership or something out there for those with mental health (because I’m sure it’s a lot of us) get the help they need. The crux of living with a disease is knowing that one day it’ll kill you. Whether it’s at 37, 23, or 65+. And for young people, especially those of us who’ve grown up with social media, those triggers are maybe more present than ever. It’s allowed us as people to be global, and while there’s a lot of good that comes with that, there’s also negatives such as cyber bullying and drowning yourself into the abyss of late night reading and paranoia.

    When I was at my lowest, the social worker at my clinic recommended me a therapist to see and I went to him for a while. If someone feels that they need to see a therapist or a psychologist, I would talk to the social worker at your clinic so that they may put you in touch with a professional.

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