When I Finally Found Others My Age With Bronchiectasis
At the age of 29 I was diagnosed with bronchiectasis. I had never heard of it, I certainly couldn’t spell it and I was having difficulty trying to pronounce it.
Prior to being diagnosed I used to joke about never really having any sorts of illness, but since being diagnosed I have good months and bad. Over the past three years I’ve begun to struggle with lack of sleep, feeling run down, etc. and I’ve always felt alone. I felt like I had an old person’s illness.
I’d attend the clinics, but there was never anyone in my age range there. I’d go to the doctor and they would take a look at my record and say, “You’ve got bronchiectasis,”as shocked as if I had just walked in with two heads.
In the beginning I’d search anywhere for more understanding of the condition. I struggled so hard to pronounce and understand it. I recall that in reading and speaking to people, one thing contradicted another. Even now, three years down the line, I’m still trying to understand my condition and how it affects me.
Along the way I’ve expressed my desire to find similarly aged people with this condition who can relate to how I feel. It was of no avail until now – during a recent bout of illness I happened to search bronchiectasis on Facebook and came across “Bronchiectasis Foundation” launched in April 2016 and based in the UK. I instantly messaged the foundation and within minutes had a reply from one of the founders, who was ironically younger then me but had the condition himself.
Just from reading their info, I leaned that there are over 300,000 people with bronchiectasis in the UK and that at least 60 percent are over 60 years old due to misdiagnosis.
I thought my journey began three years ago, and to an extent it did, but finding the Bronchiectasis Foundation is just the beginning of raising awareness, funding research and making sure nobody feels alone.
We want to hear your story. Become a Mighty contributor here.
Image via Bronchiectasis Foundation Facebook page.