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Volunteer Advocate
cf insights cf insights


We’ve been talking about mental health a lot this month, and self-care plays a pivotal role in both physical and mental health. While we’ve been sharing resources and information, we know some of the best resources are the advice from CFers themselves. Here are some tips and advice from our community:

  • “As far as self-care, you cannot pour from an empty cup. Take the time to refill and refresh or you may not be any good to yourself or those around you.” – Jess Best
  • “I have learned that I can’t manage everything on my own, and that pride should not get in the way of happiness. Although it may be difficult at first to find the right person that can fathom the multi-level affects that CF can create in our minds, finding a friend or counsellor you can trust is imperative. Take the time to invest in yourself. If you don’t get the help that resonates with you, then keep searching for it. Your mental health is so very important!” – Timothy Vallillee
  • “Don’t spend your time worrying about your “expiration date”. As my mother said, anyone could walk out of their house tomorrow and get hit by a bus – there are no guarantees when it comes to your time on this earth, so it is best to make the most of it without focusing on when and how it will end. Take the best care of yourself that you can, and then do things that make you happy!” – Terra Stephenson
  • “Don’t be afraid to say no. Listen to your body. It took me a long time to understand that there are days where I need to lay on the couch all day to recharge and I don’t need to feel guilty for it.” – Mackenzie Norris
  • “I’ve learned that if you don’t take care of yourself, you won’t be able to do the things you want to do.  I’ve always stayed in tune with not only my body, but also my mind. I find I’m always reflecting on how I’m feeling physically, mentally and emotionally so that I can take steps to stay healthy in all aspects of my life. But this constant thought process of evaluating how I’m doing can often backfire. Too much thinking equals too much stress. One trick I’ve found hugely helpful in quieting my mind has been Mindfulness meditation or Mindfullness-based stress reduction. Granted it takes a bit of learning, commitment and time but it’s the only thing that I’ve found that really allows me to relax, feel more at peace and be able to cope with everything CF throws my way. I would highly recommend mindfulness meditation as a way to cope with CF and life’s stressors.” – Kim Wood
  • “Make sure you talk to people around you and don’t hide it. It can be very damaging. There are great teams at your CF clinic that can help find you help. With the amount of stress we endure and the dramatic events that can take place it is very common for Cystic Fibrosis patients to need mental health care.” – Rob Burtch
  • “My best lessons about self-care in relation to Mental Health are to not be afraid to ask for help. There is such a stigma around Mental Health issues that many people are often afraid and embarrassed to look for help. CF causes scars both physically and mentally that we have to deal with on a daily basis and there is no shame in asking for help. Unfortunately, I developed PTSD after a life-altering ICU admission a few years ago. I never spoke of it until it was to the point that I wasn’t sleeping, and I could focus on nothing other than that ICU admission. Asking for help was freeing, it allowed me to show fear and vulnerability for the first time without worrying about the repercussions. Never be afraid to look weak, our lives are depicted by the scars we have; CFers are survivors and that will always be something to be proud of.” – Meaghan Macrury
  • “Listen to your body, and mind. Do not let your pride get in the way, learn to ask for and receive help! Take advantage of the many resources that are available from your family physician, CF clinic, CF Canada, or other persons/families affected by CF. If you are feeling overwhelmed, depressed or are having thoughts of self-harm please seek professional advice.” – Brenda Chambers-Ivey
  • “It took me a long time to recognize my anxiety; it has been with me since I was a child. Not until later in my adulthood did I really begin to identify and recognize the real need for help in understanding and dealing with it.  This, I offer, is a key component of personal care; be proactive.  If you think there may be an issue, seek guidance to learn about and understand what you may be feeling.  There are different care options and practices.  You can explore these with guidance to see what “fits.” Now, more than ever, there are avenues one can navigate to assist with mental health self-care.  I believe seeking help allows for better understanding, acceptance and ultimately finding ways to deal with and heal oneself.  For me, it is a daily process, but I am more equipped to manage and even prevent larger scale issues because I know how to use strategies that help and where to seek further assistance and potentially get answers when needed.  Moreover, I am neither ashamed nor scared to do the aforementioned or to discuss my mental health; my anxiety is real and is part of my everyday life.  So I attend to it daily, like the rest of my health care, the best I can.” – Alex McCombes


Have insights you would also like to share? To be quoted in our blog please contact Terra at tgillespie@cysticfibrosis.ca