It is difficult to imagine anything good coming from being diagnosed with Li-Fraumeni Syndrome. Yet as our members remind us, the good is in what you choose to see. Power and knowledge can be harnessed from the diagnosis. We asked our support group members what was the BEST thing they learned by living LFS. There were a lot of common themes and we could really relate to the answers.
HOW to LIVE.
Lisa- To live life how YOU want. Do what makes you happy. Enjoying the moments that will be memories. And thankful to have those experiences. Living life like it’s a bucket list. And not take life so seriously!!
Dina- Take nobody or any day for granted. I compared to, that it could be like a person that tested HIV positive … And you wait to learn if u come down w a full blown case of AIDs. Not what any of us want. Yet we learn to dance in the rain !
Kim- It’s more important to be there for someone in their tough times than it is to try and say something that will make things better, that empathy is connecting with the emotions someone is feeling rather than the circumstances that brought about those emotions, that someone can look perfectly healthy on the outside and be dealing with a boat load of crap on the inside–so don’t judge the book by its cover even if that cover is beautiful; that we can do very hard and painful things and come out better on the other side; that joy and sorrow are not mutually exclusive–you can feel both at the same time.
How to EDUCATE.
Sarah- Knowing I have LFS provides me with the information I need to make wise and healthy decisions for myself and my family-it does not predict my future!
Lainie- Best thing I’ve learned from living with LFS is that I have LFS. Knowing has saved my life #earlydetection
Kim-… to be gentle with myself, because even I don’t know everything I’m dealing with all the time (like the time I lacked motivation and energy and felt like berating myself because I wasn’t getting more done, then found out my hormone levels were at zero–from stress–and trying to whip myself into having more discipline wasn’t going to help because it wasn’t a mental problem, it was physical); LFS has taught me to think outside the box to find solutions to problems–if one way doesn’t work, another might.
HOW to ADVOCATE.
Jaimee- …..sometimes you have to be your own hero. You can’t just sit back and let the Dr’s decide what you need. We arent typical patients. You have to speak up for yourself and be your own advocate!
Nancy- I’ve learned to be my own advocate, listen to my body, push my doctors and I’m not crazy!
Kim- LFS taught me positive and negative ways to show compassion and empathy as we’ve been on the receiving end and know what it feels like (for example, “Call me if you need anything!” is not helpful, and honest statements like “I don’t know what to say–I wish I did! My heart is broken with you” is so much better than saying nothing).
I am NOT CRAZY. I am NOT ALONE.
Jen- The best thing LFS has taught me is what my p53 gene does! & how to prioritize & how to deal with grief.. & how social media support groups are sometimes better than therapists..
Brandy- That being a hypochondriac about my health doesn’t make me crazy like others think I am seriously tho, that even though it has taken so much from me, it doesn’t define who I am. And that I am not alone in this hot mess of a mutation!
Pat- That my life was not cursed by a voodoo witch. Wasn’t until my husband and both children had been diagnosed that Li fraumeni was suggested. So from 1973 until 2000 I thought I had really pissed off the cosmos.
Row- I am not alone and feel less rare because of living with LFS.
I am living LFS, but I am MORE than LFS. LFS taught me what is IMPORTANT.
Jeffrey-…that it doesn’t define who I am. It is just one of many characteristics.
Aaron- That remembering the ones we’ve lost means that they’re never truly gone.
DeAnn- LFS has taught me that cancer is a piece-of-loved-one-stealing-s**t. It also taught me to leave my bubble of security and stranger-danger mentality and open my heart to the unknown and people that I don’t know. While LFS sucks the mighty wind of a gassy Boston Terrier, without it, I would not have met the people that have become a permanent part of my life and will forever hold a place in my heart.
We can Encourage. We can Empower. We can Educate. We can Connect. We are living LFS.