When Support isn’t Support...

I’ve been quiet for a little while now on all things ARFID. Reason being a few weeks back, I was banned from a support group for what I felt was merely offering support to a fellow mom who was journeying on a very similar path as our own. The reason I was given when I went to the admin of the group about it was, “diagnosing another member with a condition based on your personal experience is equivalent to offering medical advice.”

I feel like I need to justify and explain my mission now. I am not a doctor. I have never tried to claim to be one. I did not go to school for years to study the vast complexity of the human body and how internal and external factors play a role in a persons overall well-being. I am just a mom who lives with the stress caused by this condition day in and day out. I also fully understand that what might be a hard and true fact for one, may not be even remotely on the same scale for another.

Whenever I bring up our experience as a family, it‘s never to push my own agenda. I make ZERO profit sharing our story despite what this group that kicked me out went on to claim. I never once told anyone “100% your kid has ARFID like mine and now here’s the best treatment plan...” If someone shares a story that touches on similarities with our own journey, I share our story and tell them to look into ARFID and if the symptoms match what they experience to bring it up with their doctor.

Banning me from a SUPPORT group for simply discussing our situation hit me pretty hard. I can’t stress enough that it was a support group and shouldn’t it be their mission to give everyone a welcoming, judgment free zone? I had been a member of that particular group since 2015, since before anyone clued me in to what ARFID even was. I only found it because someone in a similar group brought up the term and told me to do my own research into it just as I was trying to do for someone else. Aren’t we all just trying to solve a puzzle? Don’t we need to have the right pieces to see if they fit? What if knowing about this disorder was the last piece they needed to make it all come together?

Because of that experience, I had almost let go of my mission entirely. I was feeling defeated and like what I had to say, our story, didn’t matter in the grand scheme of things. Then an old friend commented on a post I made on my personal page about a new vitamin patch we are trying with Alex (I’ll write more about that in a separate post) saying she admired the fact I was always looking for innovative ideas to help him. She said she knew it wasn’t easy on any of us and that she wanted me to know that my efforts are highly praised. It was kinda the kick in the pants I needed to remind me why I’m doing all this. I feel like any mother in my position would want nothing more than to make things better for their child. I can’t expect his world to get better unless improvements are made to the research, understanding and treatment of the disorder. For that, I cannot be silent. I won’t be. Even if when all is said and done all my writing about this does is makes it so one other family out there realizes that they are not alone, it’ll be worth it.

I want our story to be one of positivity and hope for others. I never want another family to feel like what they have to say doesn’t matter. It does. Your journey may be different then ours, in fact, it probably will be, but we are all headed towards the same goal. We can’t let this mealtime monster win. So what if my son never eats a plate of spaghetti with me? Is that the end of the world? (Which by the way spaghetti is one of my own safe foods and going down this path with him has made me really focus on my own issues but that’s another post for another time.)

None of this is Alex’s fault. I know this isn’t something he can control and not a switch he can flip on and off. There’s a broken circuit somewhere inside him and all I want is to put the pieces back together for him and anyone else that needs to make the circuit complete so they can have all their mealtimes be more enjoyable without judgment.