A Perspective for Parents with a Chronically Ill Kid-ep28

Listen in for today’s answer from anonymous Instagram follower: “Some of my friends think my son is faking his chronic illness because they don’t see how he struggles on a daily basis. Do you have any tips on how I should handle this?” Because you mentioned POTS in your message, I’ll share some videos, articles, and podcasts that might be helpful for this specific condition. (For other parents, finding short videos and articles to share with family and friends can go a long way toward helping them understand.) This video on Vimeo was greatl for some of my extended family. Also here’s an article from Dysautonomia International that talks about various conditions of the automic nervous system, including POTS. Here’s an excellent article explaining the Spoon Theory in a simplified way. I talked about living with a dynamic disability in an earlier podcast. And this podcast interview with my functional neurologist could be very helpful as well. Oh, and let’s not forget this wonderful article explaining brain fog.

“Have grace and compassion for your kid even if they can’t explain exactly how they’re feeling. Sometimes it’s just too overwhelming to put into words.” - Sarah Reid

In today’s episode, I’m offering some insight to equip parents with an understanding of what many chronically ill kids and young adults struggle with on a daily basis. And, more importantly, how parents can support and help their children. Of course, I can’t speak for everyone but I’ll include my perspective and what I’ve learned from others in the chronic illness community.

Helpful takeaways for this episode:

• Expecting a “positive-vibes-only” attitude is great, but sometimes life sucks and you have to allow your kids to acknowledge that too.

• You should ask how you can help, but keep in mind we don’t always know what will be helpful. In those times, just do something you know will be a blessing. It shows you care and you’re trying.

• We want to do things that “normal” kids and young adults do, but our bodies make us pay for it. So it may appear that we’re lazy because we’ve been able to something fun but then struggle to do other things.

• We’re not lazy if we’re struggling in school. Brain fog is real, and oh so frustrating. For a better understanding, check out this article.

And so much more!

I’d love to hear from you! Connect with me on Instagram @be_potsitive And check out my chronic illness merch on Redbubble where you’ll find lots of cute items to make you smile and raise awareness for our community.

** If you have a burning question you want me to answer in a future episode, feel free to dm me on my Instagram @be_potsitive!

Thanks for listening!