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Volunteer Advocate
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Cystic Fibrosis & Invisible Illness

Sometimes disabilities and illnesses are invisible. For that reason, it can become a lot more difficult to explain to others what struggles or challenges you are facing. People living with CF know perfectly well that looking healthy doesn’t mean necessarily feeling good and being well and so, we wanted to know our community members’ thoughts about having an invisible illness and the importance of educating the public about it.

-“This is such an important question and one that is so diversely prevalent in today’s world.  More and more invisible illnesses are coming to light, revealed, explored and shared. Everyone is different and has their own life circumstances… “Walk a mile in some else’s shoes…” as the saying goes is an all too important notion. I believe everyone has something going on.  With less judgment and more empathy, compassion and ultimately kindness, we can educate ourselves and others more about invisible illnesses. For me, two of the invisible illnesses I have dealt with are cystic fibrosis and anxiety.  Each of these branches off in many diverse ways, no differently than the unseen illnesses of others. It is never just one thing; invisible illnesses, like “seen” illnesses, are multi-faceted. I did not share about my illnesses for a long time. I want to now. Sharing and educating takes away stigma and hopefully leads to understanding, acceptance, and compassion.” – Alex McCombes

-“To help people shred their ignorance of invisible illnesses and to learn how they can help. And [it is important] to remind them that it could happen to them or someone they love when they least expect it.” – Tim Vallillee

-“There are so many invisible diseases across the world; it is hard to be able to pick them out of a crowd. I think that if more people were knowledgeable about cystic fibrosis, perhaps they could begin to understand why we have to function the way we do. I would hope that would instill patience in them. From personal experience, I can promise that when we walk slow upstairs or have to take a break…we are not doing it to upset the people walking behind us! Take the extra 2 seconds and think that maybe, just maybe they are fighting a battle you know nothing about.” – Meaghan MacRury

-“Bringing awareness to rare invisible diseases is important because unless people know about them, how are they going to donate to fund research and help patients? Making someone aware of a rare disease might not seem important in the moment, but in the long run, it’s very fruitful and essential to get the word out about invisible diseases. Another thing is that it will help people become aware that not all disabilities are visible. There are a lot of people shaming those who look “apparently” healthy for using aids or handicap parking passes or sitting on public transit, etc. If we could get the word out then, people will be more sensitive!” – Chelsea Gagnon

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