I’m the type of person who truly considers over sharing a terrible trait. I’ve mentioned it in my past blog about social media, how it’s so strange to me that we post so much of our real lives online and let strangers in on our daily routines, celebrations etc. yet won’t even say hello to them if we see them at the grocery store. So, you would automatically assume the idea of a detailed blog or Instagram page dedicated to a personal health journey of mine would be a HARD PASS.
Honestly, for a couple of months that really was the case. To make a confession, I still haven’t told many people I know in “real life” about my health journey aside from my closest circle. So I really started to wonder what the difference was about this circumstance that finally made me want to open up?
For starters, I think because my tumor is so rare, there is a plethora of information online smeared with “could”, “may be’s” and “in some cases” but all of those just become overwhelming without a face or name to them. I got frustrated like I would never know the answers to my questions without being in front of my Dr. When I first researched this disease there were no personal stories that I found immediately. I would have loved to have stumbled on someone going through something similar at my age, even in my area.
Then I found the Desmoid Tumor Support page on Facebook. All the sudden there were thousands of faces associated with this disease and thousands of people going through something similar. There were individuals who were older and young than me as well as those who were my age. I immediately began to feel human again and with that came a sense of relief. Questions I had were being asked and answered immediately and the responses were real life, tried and true (of course with the understanding that everyone’s circumstance is still different) and not an article posted by a medical facility. As helpful as those articles are, there a certain coldness about them. -shrugs-.
I found that it was such a HUGE support for me that I decided it was a feeling I had hoped to supply someone else who was feeling the same way about their tumor. Someone who didn’t dig hard enough to know there is a whole support group about our disease. Someone who is scared at something going on in their life and isn’t sure what their feeling is warranted.
There are so many people going through so many different things that could relate to the things I was feeling too. Whether it was a tumor or not.
I am so glad I have opened up to those who are going through this journey too, and even those who are facing other life difficulties. I have met some of the strongest warriors and kindest people who remind me every time I need to hear it that I am not alone, that the bad day I am experiencing will eventually be in the past and the jitters I feel from appointments and scans are normal.
I may have started my blog and Instagram page hoping to help others but in the end, I have really been helped the most.
So, I guess my answer to why I started this blog is simple: I needed it.