In February of this year, I started getting nightly infusions of saline through a PICC line. As we all know, hydration is a big part of health and nutrition and, due to my limited intake caused by gastroparesis, I wasn’t getting nearly the amount of fluids necessary to stay hydrated. Fluid consumption also plays a huge part in controlling my Postural Orthostatic Tachycardia Syndrome. Without these fluids, I faint multiple times a day which is both extremely inconvenient but also dangerous to injure myself, especially with my bad joints from Ehlers-Danlos Syndrome.
When my nurse came from the Extramural Health Program to bring my weekly supplies and do my dressing change nearly 2 weeks ago now, I was told that they wouldn’t be caring for me any longer since I no longer met the requirements for their at home care. We weren’t necessarily surprised since my nurse had casually broached the topic a few times since Medavie-Blue Cross came into the picture. However, we were, nonetheless, still upset and panicked. The two options given for continuing infusions were to either pay for them out of pocket which is a huge expense or go to the IV day hospital every single day. Neither of these were good options.
That day, I shared my feelings on Facebook and my post started to circulate around. I was contacted by several media outlets wanting me to speak about what was happening but I hesitated. I wanted to make sure we had exhausted every option first. Thankfully, my mom called extramural the next day and spoke to the manager who cleared things up. She reassured us that I would not be abandoned and that they should have broached the subject differently. We weren’t guaranteed that they would continue providing forever but they weren’t leaving us high and dry as we were told. Since then, we have come to find out that a few people with some pull had made some calls that helped solve this issue for which I am very grateful.
Despite having the issue with extramural cleared up, a couple of these media outlets still wanted to talk to me; not necessarily about my care from extramural but just about my story, my experience of being a patient with a disease that’s not very common nor well understood. To be honest, my initial reaction was to tell them no. I was afraid to put myself out there so publicly. Sure, I do write a blog that’s public but this was different. I wouldn’t be in control of what was written or said and I was afraid to have my thoughts misconstrued or misunderstood. After talking it out with my good friend Hannah and my parents, I came around to the idea and decided to go for it.
My first interview was easy; short and sweet. It was with the Telegraph-Journal. The journalist just came to my house and we sat and chatted for a bit. The next day, the article was published and I was happy how it came out. I’m glad I did an interview for print first since there was less pressure seeing as I wasn’t in front of the camera.
A few days later, a journalist and videographer came down from the CBC in Fredericton to film with me for the morning. It was a really neat experience! Before we started filming, Ed, the videographer, set up the lighting and such in my room while I chatted with Catherine, the journalist, which gave me a pretty good idea of the questions she’d be asking on film. After the set-up was done, we filmed the interview portion which took about a half hour. I was very nervous but I had no reason to be! Catherine and Ed made me feel so comfortable in front of the camera.
When we finished the interview, we spent about another half hour filming clips of me doing random stuff I enjoy doing on a day-to-day basis: crocheting, watching Grey’s Anatomy on Netflix, looking at my Warrior Beads, etc. We also got clips of my mom and I putting my feeding pump on my IV pole and hooking it up, some clips of what living with EDS looks like. Then, Catherine and Ed interviewed and filmed with my mom.
The whole process took a bit over 2 hours to put together the 3 minute clip that played on the news that evening. The amount of work that goes into producing a news broadcast absolutely floored me! But, it was totally worth it because I was very pleased with how it turned out. I think that they captured my thoughts and my life well. They ended up playing a bigger portion of my interview on the CBC radio the next morning and also ran an article on their website.
The response to my articles has been better than I could have ever imagined. I’ve had several people from the maritimes with EDS reach out to me, some of whom have never met anyone with their condition, even through the internet! I’ve also had my interview shared around Facebook quite a bit by a lot of people, including the Ehlers-Danlos Society, which I think is just about the coolest thing ever. More and more people having been finding my blog and other social media which will hopefully help grow awareness for EDS.
All in all, what changed my mind about sharing my story is that some people in my situation aren’t lucky enough to have a voice or a platform on which to share it. I am one of the lucky ones who do. Ultimately, I didn’t share my story for myself (in fact, I hate being the centre of attention which is part of the reason I hesitated so much) but for others who haven’t been able to share theirs. I think that, as a patient with a rare disease, if I want change to happen, if I want awareness to happen, I need to make it happen, I need to be the change. It took a lot of courage and a bucket-full of bravery but I am glad I did it. Some of the best things definitely come when you step out of your comfort zone.