• Important topics for you

    Posted by William on January 10, 2019 at 1:57 pm

    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?

    William replied 5 years, 6 months ago 2 Members · 2 Replies
  • 2 Replies
  • luisa-palazola

    January 10, 2019 at 4:09 pm

    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.

  • William

    January 11, 2019 at 10:56 am

    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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