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Volunteer Advocate
cf insights cf insights

On Living with Chronic Illness

Living with cystic fibrosis is a life-long endeavor, and we know CFers have a lot of wisdom to share about living – and thriving – with chronic illness. So we asked our community: “What advice would you give someone recently diagnosed with a chronic illness?”

  • “To take each day at a time and to continue living their life to the best or their ability. Not to let their disease dictate the rest of their life. Many people with chronic illness live long lives with family, careers and enjoying life.” – Rob Burtch
  • “I would advise the person to NOT believe everything they read on the internet. Be sure to learn the correct information regarding your illness by surrounding yourself with a healthcare team that can ease your transition into this new and overwhelming phase of your life.” – Meaghan MacRury
  • “Don’t stop living your life or doing the things you want to do. You may have to modify the way things are done, but having a chronic illness doesn’t mean you can’t still do fun things.” – Mackenzie Norris
  • “Make sure you take the time to grieve. Acknowledge your feelings, your disappointment, your anger, and your fear. It is all normal. Eventually, the impact will lessen and it will be easier to move forward and cope more positively.” – Megan Parker
  • “Find someone you can talk to who will listen to your concerns and will help you to deal with the unique challenges that come with having a chronic illness. Having a community of people who are coping with the same illness can also really help when you have questions or need some support – talk to your doctor about connecting with people, look up groups on Facebook, or join a support group.” – Terra Stephenson
  • “Don’t panic! Give yourself, and your loved ones, time to absorb the diagnosis. Listen to your physician(s) and adhere to your medical/treatment routine. It is in your best interest. Do your research and connect with others who are in the same situation. Learn from their experiences, share best practices and appreciate the support you can give each other. AND……..do not believe everything you read on the internet!” – Brenda Chambers Ivey
  • “It might change the way you live on a day to day basis, but it will make you a stronger person!” – Chelsea Gagnon
  • “When diagnosed with a chronic illness, one needs to be patient, be observant and listen. Having a trusted companion, to be privy to and part of the opening discussions is vital. Often it is the case that one is inundated with information and having a second set of ears certainly helps.

Take notes and seek to properly educate yourself through “reliable” (and often recommended) sources. Think and evaluate before you act; don’t do anything rash. This is part of listening, educating and understanding your situation and learning how to cope with and best treat your illness.

Reach out to friends and family to foster a network and support system. Often people have wonderful intentions but do not fully understand the situation.  Share resources and information so those closest to you may educate them in an effort to understand your illness.

Lastly, one of the most significant things that help me is framing (and often adjusting) my perspective. I try to focus on a positive and proactive approach to dealing with my illness; believing in possibilities and what may help to keep me present and motivated.” – Alex McCombes

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

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