Yesterday, I wrote about my long process of being given two new diagnoses of GERD and mild Gastroparesis. It took 5 months find answers, and the time between appointments was not fun at all.
So, during this time, I reached out to others in the gastro-world – just like so many in the diabetes online community have to find their way in their own new diagnoses. When I had my results from the gastric emptying scan, I joined a few groups on Facebook, looking for some feedback. It was then I felt so upset. I left one within 2 hours of joining because of the feedback I received.
I didn’t qualify to be in it.
One even said I didn’t have gastroparesis – everything was normal. That I was fine and overreacting.
I was looking for answers because I was new to this and confused. I didn’t have my own official diagnosis but I did have the test results (the radiology tech gave me the numbers after each scan). But rather than being met with support in their “support” group, I was met with comparisons of how others’ situations were so much worse (the “Worse than You” syndrome), and posts to basically say that my results weren’t a big deal. Which I knew they were only mild, but I wanted to connect with others who also had mild GP. To know what changes I needed to make, and what to expect. To find tips and tricks of things that helped them. To know if this was something that was pretty steady or a progressive condition. I knew I couldn’t have been the only one. But right off the bat, I had the feeling that I didn’t belong. That I didn’t “qualify” because I didn’t have a result of severe gastroparesis.
It was then, more than ever, that the anger of how some with Type 2 diabetes feel within the space of the Diabetes Online Community. Especially by some of those with Type 1 who can be not so nice. The ones who find it all too easy to point fingers and say, “Well, I have type 1 and so it’s not my fault and mine is so much more severe than yours,” or “You don’t know what it’s really like because all you have to do is modify and monitor your diet!” or “I wish I could just take a pill and be okay – you have no idea what it’s like to do all that it takes for us with real diabetes (like — seriously — what does that even mean!!??)” (And yes, I’ve really seen those statements being made.)
Similarly, in this group, because I didn’t have a very large amount left after 4 hours during my emptying scan, or because I wasn’t on a liquid diet or had any of the other equipment that some have to have when gastroparesis is very severe, I felt as if I didn’t have “real” gastroparesis. I have the equivalent of a Type 2 that only as to check their BG once a day and change their diet. But that doesn’t mean diabetes doesn’t affect their lives. They still do have that daily reminder. They do still have to go to a doctor for check-ups. They do still have to think of the worry of their condition possibly requiring more attention over time. And for most, it’s a completely new way of learning and getting used to different food and exercises.
There are many people with new diagnoses of Type 2 diabetes that have to go through the same guilt, frustration, and feeling of “what do I do now??” And now, having experienced a similar situation, I can personally see where so many would just rather not be in the mix.
And no, I’m not upset or, what is the term? Butthurt, I think is it? But it does make me concerned that we may be missing an opportunity to support and be there for some in the Type 2 community who simply just need to hear: “It’s okay, we’re here if you need us.”
While the urgency to know and learn about the two has two different pathways, both are changes in life – sometimes pretty big changes. Both can be traumatic at first. Both can be confusing and frustrating. But both deserve support and care. No one should feel like they need to “qualify” at some level to be in a general (name your condition) support group when they have real, legitimate questions or feelings of “what now?”
I’m glad to have known some in the DOC who also have GP that I could turn to and ask questions about their diagnosis and things they needed to change. Otherwise, I’d still probably be lost, especially since Dr. Google will have you losing.your.mind.