Living with Cystic Fibrosis: You Do You

Living that Hospital Life March 2019

Hey friends and happy Monday evening! It is the end of Memorial Day weekend and we are heading into the final few days of Cystic Fibrosis Awareness month. Because of living the CF life in some big ways currently, the month almost snuck away without giving me chance to share a few perspectives up on the blog. So the next few days are going to be a “power hour” of sorts while we share some thoughts for 2019 Cystic Fibrosis Awareness month.

This year has presented our life personally with some new CF experiences and the community with some pretty intense ones as well. For one hearing several different places “there are more adults living with this disease than children”. Really think about the impact of these words. A disease that is defined as a childhood illness has more adults than kids. This changes how we define the success of the research and medical treatment, this changes the outlook of those living with the illness and their loved ones, and this changes the medical worlds’ way of managing their patients. Truly – it sorta changes everything. And it has been my personal experience that the way in which things are changing are often happening at a rate that can be difficult to keep up with because you have CFers at all ends of the spectrum. This puts incredible valuable on perspectives of those living with this disease and their willingness to share.

Now I of course do not have CF, never will have CF and can never understand what it feels like to live with CF – PERIOD. Believe me, I am very aware because CF lives in my house. But along with the change in this disease comes the introduction of new roles and caregivers that are spouses is becoming more and more common. But this is still a relatively new addition to the world of Cystic Firbrosis – so we just don’t have that many in this role to share their story and what it is they are seeing. When you marry someone, you share a life with them and what you can offer about your loved ones’ disease is different than any other caregiver’s perspective: parents, sibling, family member. So I have chosen to share our life and my perspective on the blog and a few specifics this week on being an adult managing CF.

Over the next few days I am going to share about CF life and marriage, careers and planning for the future. These are adult topics that are very challenging in the world of CF and for those who have joined their life with someone living with the illness. Social media has become a way for so many to connect and I have had the privilege of learning from other spouses in unique roles and other CF spouses. This is my way of giving back and adding potentially another way to look at it. Since CFers can’t be around each other for fear of infection and since the landscape of this disease is changing so fast and often – social media has become an incredible tool. However I feel I must also acknowledge the big old elephant that social media invites into the room: comparison. Yes, us humans have a terrible way of comparing ourselves to others and social media literally thrives off of that for success. And believe it or not CF is no different. You see another CF patient or spouse having a better experience or seeming to “succeed” in comparison to your current state of perceived failure. It is crazy, but just like you covet a fashion blogger’s new shoes or a travel blogger’s latest adventure, we living in the CF world can be jealous of another’s health or ability to experience a part of life that is not currently available to us. This is human nature and VERY normal – its just funny to consider it in reference to disease.

The best antidote for these feelings or social media turning into a painful place is for us all to remember sharing our story can be very helpful, but it is still OUR story. Just because something worked for us doesn’t mean it is going to work for them. Maybe a new treatment or medication made your spouse leap out of bed and do cartwheels down the hospital hallway. Please share what happened, why you made the choice for that course of action and what you experienced – but if someone else doesn’t want to try it, this doesn’t mean they are wrong or don’t care about their health. In our missions to help one another we can get very passionate, but we must remember there is not one right way – there are as many ways as their are people. And medical history and circumstances and meansand access to medical teams all differ between each and every CFer and their family. It is not our job to judge, it is our duty to share and offer grace and lessons learned. So as I share over the next few days and if you are looking to social media for support or guidance or to not feel so alone- I am so happy you are here and I can’t wait to learn from you too. But just because this is what works for us, please don’t feel this is the only answer. Heck, some of our own “answers” have changed over the years. We are all learning and if we are still in this life – we are all being given a chance to keep evolving.

And I invite anyone reading this to share their opinions in the comments or to connect with me, but please remember to be kind and respectful – we are all doing the best we can in this life. Looking forward to sharing with you all!

Thank you so much for reading and remember to make it a great day!

Jackie


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