FEATURE FROM THE SPOONIE DIARIES
Gerry is someone I follow on Instagram who tells life exactly as it is, but is still so optimistic about life.
When we share our health online, I think it’s really important to show all sides, which Gerry does in a really brilliant way. I know you’re going to love this edition of The Spoonie Diaries!
So, lets get to know Gerry…
WHAT IS YOUR CHRONIC ILLNESS AND HOW DID YOU GET YOUR DIAGNOSIS?
I was diagnosed with Idiopathic Pulmonary Arterial Hypertension in September of 2018.
For most of my life I have always been pretty healthy, so when we relocated to Colorado because of my husband’s job and I started to feel really winded, I attributed my symptoms to altitude sickness. Over a couple of months and my symptoms started to get worse, I started making excuses for the shortness of breath and weight gain to the lack of exercise I had been doing since my twin boys were born a year prior.
I made a lot of excuses when my body was clearly telling me that there was something wrong, but I had never really been someone that was sick often and I didn’t understand what my body was telling me.
By the time I ended up going to the hospital because I couldn’t breathe, I was in severe heart failure because of my Pulmonary Hypertension.
WHAT WAS YOUR INITIAL REACTION TO HEARING YOUR DIAGNOSIS?
When they diagnosed me, I honestly had never heard of it before. I was shocked and confused, but more shocked than anything.
When it comes to fight, flight or freeze, I’m definitely a freeze type of reaction so I sort of felt like I wasn’t registering the news and just sat there while the doctor started explaining the disease.
HOW MUCH DID YOU KNOW ABOUT YOUR CHRONIC ILLNESS BEFORE YOU WERE DIAGNOSED?
Sort of answered this in the above question, but I had never heard of pulmonary hypertension before. I was in nursing school for a short period of time and had never dived into those types of rare diseases. My initial reaction to being told I was being diagnosed with a rare disease was, “Am I going to die?” and then continued into being so frozen that I didn’t even really have any questions until later.
WHAT IS ONE THING YOU’VE LEARNT FROM BEING CHRONICALLY ILL?
I’ve learned that what the world perceives as chronically ill is not what it really looks like day to day. Most of the time, people would look at me and think I’m a healthy 20-30 something, just out living my life.
But what I didn’t realize is that so many chronic illnesses are invisible and you almost never know by just looking at someone what is going on inside of their bodies.
HOW DID YOU MAKE THE DECISION TO OPENLY DISCUSS YOUR DIAGNOSIS AND JOURNEY BEING CHRONICALLY ILL? WAS IT AN EASY DECISION TO MAKE?
When I was originally admitted to the hospital, I sort of went silent for a while on social media because I wasn’t sure what to say.
I knew that people were sort of getting the hint that something was wrong but nobody actually knew. Once I started posting about my diagnosis and what was going on with us, I realized I had such a great community of people around me.
It wasn’t something I planned, because we were so far away from our families and friends, the easiest way to keep them all updated at once was to post it to social media.
When I started posting publicly to Instagram, I started to get lots of feedback from other people with Pulmonary Hypertension and I started realizing that a lot of them were kind of scared to talk about their disease publicly. I started my instablogging (@_gllangan) because of the great feedback I’ve gotten and seeing how impactful sharing my story with people has become has given me the drive to keep sharing.
HOW HAS BEING CHRONICALLY ILL AFFECTED YOUR LIFE? HAVE YOU MADE MAJOR CHANGES?
Honestly it changes day to day. I don’t feel that for the greater part, it’s affected me day to day. But I do know that things have changed when I look back on the last two and a half years and see how much this disease has really engulfed my life.
It’s changed the way I think, the way I plan for family trips, even down to the small things like the way I eat my meals. Everything has changed when I think about it, but it’s changed so slowly that I almost don’t notice it.
IF YOU COULD GIVE ONE PIECE OF ADVICE TO SOMEONE WHO HAS BEEN NEWLY DIAGNOSED, WHAT WOULD YOU TELL THEM?
I would tell them that pulmonary hypertension is terrifying to be diagnosed with and that the statistics you read online does not accurately reflect the disease itself. There are people who have lived 20+ years with this disease and are thriving. I know that it’s scary at first, and you can’t help but google it, but just take everything you read with a grain of salt.
DO YOU THINK YOUR PHYSICAL HEALTH HAS IMPACTED YOUR MENTAL HEALTH? HAVE YOU EVER SOUGHT HELP FOR IT AND DO YOU HAVE ANY COPING MECHANISMS?
I do think that it’s impacted my mental health, but not in a bad way. I think that I am much more mentally aware of my body. I know it inside and out. I know when something isn’t right and I know when something isn’t working.
I also think it’s made me mentally stronger than I ever was before. When you’ve been pushed far beyond what you imagined you could handle, I think the only way you can cope is to adjust your thinking and realize that you made it this far, what’s to say you can’t go even farther? It made me realize that this body and my mental health are so much stronger than I ever thought they were.
WHAT DO YOU WISH YOUR FRIENDS AND FAMILY KNEW/UNDERSTOOD ABOUT YOUR ILLNESS/DISABILITY?
I wish they knew that things might seem really grim sometimes, but it’s not something I dwell on. I know I’ve talked about it a lot, and I always say I’m okay because I really am.
Dwelling on the negative numbers, the negative results and the negative of this disease are not something I think about daily. It would be detrimental to my health so I wish they understood that the more they focus on the negative, the worse it is for me.
FINALLY, WHAT DOES CHRONICALLY LIVING MEAN TO YOU? DO YOU HAVE ANY ADVICE FOR READERS GOING THROUGH SIMILAR THINGS?
Chronically living to me means I’m living. I’m living and I’m thriving the best I can. Because the alternative would be not living right?
So living, or chronically living, they’re all the same– it’s just living. And I’m always trying to make the most out of what I have in life. My advice for anyone newly diagnosed with PH or living with a chronic illness is that your mental game goes a long way in keeping your physical game strong.
When you find yourself going to a dark place, I’m not saying that you don’t acknowledge that hard time, but you can’t live there.
A massive thank you to Gerry for sharing her story. Make sure you follow her on Instagram!