A person crying behind a row of roses

Feelings of Survivor's Guilt

I hear a lot about survivor's guilt as a cystic fibrosis (CF) patient. I’ve had moments in my life I feel it creeping up when others talk about struggles with fertility that I didn’t have. I feel it when I hear of a young person's passing, a life full of potential that never got to see it. I have sadness for other warriors that lost the battle or are on their second lung transplant. Sometimes I feel it creep in as I make plans for an upcoming birthday or milestone.

All for one and one for all

I continually fight through my feelings of survivor's guilt though and here is why: We are a team. All of us together. Every one of us fights battle after battle that most people can’t even imagine. We may all have different story lines, but the plot is the same. Every one of us has been in battle mode most of our lives.

So, every single victory from another CF-er is a victory for all of us. I’m proud of all of us and I wouldn’t ever want any of my other warriors to feel bad about surviving. For all the warriors in better health than me I feel elation for them. Even in the best-case scenario this disease is brutal so if some of us can find moments in between the tough days, moments where they can thrive- then I feel happiness for them. I’d never want anyone for a moment to feel guilt for that.

If I one day succumb to my illness, my biggest hope would be for the warriors still fighting. My hopes would be for them to find their cure. So please, when the urge comes over you to feel guilt for coming to a point other people didn’t get to- spend that energy living in their honor instead. Enjoy every moment and continue the fight for them. Continue to fight to bring awareness to our disease so others can live long lives. Continue to thrive in every way you have the ability to.

Mourning a mindset

I know sometimes it can be very hard to get out of the mindset where we focus on what we as a whole lose every day. It's impossible to not focus on how drastically different our days look like compared to someone perfectly healthy. Let's face it - we do lose a lot. We lose experiences. We lose control. We lose abilities. Worst of all, we lose people.

Yet if we step back a bit and look how much we have gained, in comparison to even twenty years ago it reminds us how far we have come. How far we will continue to go. We are continuing to make strides faster than ever before. We have new medications available. We have research targeting the underlying cause of CF. We currently have work being done to provide better outcomes with lung transplants. Gene therapies are advancing dramatically in the last three years. There is hope on the horizon.

Yet, there are so many people who never got to get to this point. There are people fighting now to stay afloat long enough to benefit from all the new treatments becoming available. So, it's hard to not feel guilty about feeling hopeful when there are fellow warriors unable to share in that hope.

A team united

When tragedy or loss hits others in the CF community, but leaves us to settle in the aftermath, some of us thank our lucky stars, while others feel guilty. There's no wrong way to process our grief for others. There is no proper way to deal with the intense emotions of living with this disease. So, I am not urging anyone to simply move on and live your own life. I am just reminding my fellow warriors to go easy on yourself. Try to remind yourself none of us, patients or care givers, asked for this. We all battle daily in one way or another. At the end of the day, we are a community; a team.

We are united for the same purpose one day. A cure. A normal life. As we fight together as a team, we feel the losses of our battle buddies. We feel the wins of our fellow warriors. I don't know why some of us suffer more than others or why some lose the battle far too early. I do know though we are all in this battle together and all of your wins are my wins, and all of your losses are my losses.

So, no guilt for doing our best with what we've got. No guilt for surviving. Instead, I say we live our lives to the best of our abilities in honor of our fallen teammates. I say we live for them, and we make them proud.

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