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CLC Member Spotlight: Amber

April 30, 2018

 

 

1. Do you have a primary diagnosis, if so, what is it? 


A: My primary diagnosis is the wonderful, glamorous ... Cystic Fibrosis! 

 

2. How long did it take you to get diagnosed? 

 

A: I was diagnosed at birth. They gave my Mum the diagnosis from the sweat test! How salty! 

 

3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?

 

A: Seeing as I was diagnosed from birth, I’ve never known anything but this life. I felt embarrassed growing up and different from everyone else because of it. I know my Mum had that burden of fear and worry for me which for any parent of a child with a chronic illness is so hard to deal with. My Mum went into a strict regime mode and didn't deviate from my treatment plan. 

 

4. What advice would you give to someone who is chronically ill but undiagnosed? 

 

A: I would personally say, keep on keeping strong as best as you can! I know my experience with CF that I’ve had to open my mouth and speak up for myself about things I’ve been experiencing and feeling. It’s so hard to not have answers I know that. Try and create a healthy space around yourself to which you can have family and friends who support you through it when you need them.

 

5. Has your chronic illness changed your perspective, and if so, how? 

 

A: As I said, I grew up feeling so different than others my age. As I got older (and sicker yay), I've seen the divide between myself and others, but in ways that I'm proud of. i used to try and sweep my illness under the carpet and now I embrace it. I feel like my CF has helped me decide on the person I wanted to become. It’s given me the chance to realize that life can be very short so don’t waste any of it!  

 

6. What moment are you most proud of in your chronic illness journey thus far?

 

A:  I think it would be in June of 2017. I was in such bad shape with my health and I think I had just given up on myself in a lot of ways. In June, I decided not to give up. I decided to fight for a life that I could look back on and say “I gave it my all!" it’s not easy, but by God it’s gonna be worth it.

 

7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey

 

A: Wow not an easy question to answer! Maybe when I had my port and peg tube placements. I took the step in accepting I needed both but when I got the port, it was so visible I felt so self conscious. I had so many comments on it and questions and dirty looks that it gave me such a complex mentally. Strange how something that can help you physically can be detrimental to your mental well being. it was so conflicting - it was a hard thing to go through. 

 

8. What or who has helped you the most during the lowest days?

 

A: Some of my motivators in life are my family and friends. I have a great relationship with them and I couldn’t ask for a better support system. Humour helps me a lot on my down days! And how can we not mention ChronicLoveClub?

 

9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?

 

A: Reach out if you are struggling. Talking to anyone and voicing your worries or struggles can sometimes help! I tell myself this is a bad day not a bad life! Do the best for yourself and that is ultimately the most you can do 🦋. I know for Cystic fibrosis warriors we can’t be around each other as a result of the illness but there is a whole world online that can connect you with others who know exactly how you are feeling, or what you are dealing with! You're never alone. 

 

10. What would you like the world to know about life as a chronic illness patient? 

 

A: My illness does not define me; it’s a part of me. So many illnesses are invisible, as is mine. I believe I was given this journey for a reason and I am choosing to smile as much as I can and laugh until my face hurts and love until my heart bursts. I’m proud to say I have Cystic fibrosis (it doesn’t have me) 

 

By Amber | @amberroseflannery

 

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