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    • #18586
      Jenny Livingston
      Keymaster

      In recent days and weeks, I’ve spoken with several friends and family members who’ve said that they’re experiencing major burnout right now. “Burnout” is typically understood to be the body and mind’s response to increased or prolonged stress. For me, it generally manifests in symptoms like restlessness, insomnia, exhaustion, lack of motivation, difficulty focusing, and overall anxiety.

      I’ve experienced burnout in many areas of life but in the past, it has oftentimes been related to my health. Just this morning, I read an article about caregiver burnout experienced by parents (mothers in particular) of children with CF.

      Do you experience burnout related to CF or other life circumstances? What coping mechanisms do you employ or what types of support have you found to be helpful during those times?

    • #18594
      Tim Blowfield
      Participant

      Patient Burnout! Yes, My wife & I were talking about it last week. She has had a very difficult last 2 years with CF support being reduced as medical support was redirected to COVID. Then last January she almost certainly had COVID and has been slowly recovering from long COVID since. In April her CF physician resigned and to date he is still to be replaced. Other contributing factors are that many Specialists do not recognise the effect the faulty CFTR protein has on the organ of their specialty. Cardiologists are notorious for such and fail to investigate why drugs normally beneficial in heart failure have such adverse effects. The fact that Vertex has shown that Trikafta should benefit her but have failed to make it available also contributes to ‘burnout’.

      We do have some good support such as Cabrini Health’s palliative care nurses who continue to encourage and support. And family.

      • #18597
        Jenny Livingston
        Keymaster

        Tim, you mentioned several things that could single-handedly cause burnout! It sounds like the last couple years have been quite difficult. I’m glad you’ve got each other, supportive nurses and staff, and family. I always find comfort and rejuvenation in family relationships as well.

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