Discussing Your Feedback: Pain, Autism & hEDS Diagnostic Criteria | Office Hours

[00:40] Dr. Linda Bluestein: Welcome back to the most popular EDS podcast, Bendy Bodies. I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we're doing another episode where you are my guest. We love it when you submit your questions directly on our website, bendybodiespodcast.com, where you can leave a voicemail or you can leave a written question. While you're there, check out our new resources page where we have 5 resources, including red flags to watch for, essential guides for joint hypermobility, and so much more.
[01:34] In this episode, I'm going to be covering some of the feedback that you all shared on some prior episodes, and this also will be a wrap to Season 5. We will be back very shortly with Season 6, so don't go away. This is going to be really fun, so grab a salty snack, your favorite electrolyte drink, get comfy in your favorite chair, and let's get ready to rock and roll.
[01:56] So the first thing I would like to address is some feedback that I received from listeners about a conversation on nociplastic pain. When I recorded this conversation, my goal was to share information that might help people better understand a specific type of pain called nociplastic pain. Pain is incredibly complex, and for those of us living with chronic or persistent pain, it can be exhausting and deeply personal. I know that for many, it's not just a physical sensation, but it's tied to years of being misunderstood, dismissed, or left without answers. And for some portions of this podcast today, I will be reading from my notes because I really want to make sure to get this right.
[02:33] Some listeners expressed concern about this discussion and felt that it could be used to minimize or invalidate someone's pain, particularly by clinicians who might point to nociplastic pain as a reason not to investigate structural or medical causes. I want to be absolutely clear — that was not the intent of the conversation and is not how I practice medicine. Pain is always very real, and every person's pain story deserves to be heard and taken seriously.
[03:00] I also want to acknowledge that for some people, hearing about non-surgical or nervous system-focused pain approaches can feel frustrating, especially if they've tried many of these strategies and are still suffering. My intention was never to suggest that these ideas are a cure-all or that they work for everyone. Some problems require surgical or medical intervention, and there is no one-size-fits-all solution. Understanding one possible contributor to pain — nociplastic pain — may help some people find tools that ease their symptoms. Even if these tools don't work for you personally, they might offer insight into why your pain behaves the way it does and perhaps open doors to other treatment options.
[03:36] And if the episode stirred up strong emotions in you, I appreciate you sharing your concerns. It makes these conversations more nuanced and ultimately more helpful.
[03:41] I would also like to address some of the feedback that I received about Episode 145, "Are Mast Cells Driving Autism?" This is really important to talk about because I know that there were some listeners who were upset by the way autism was discussed in this episode. Specifically, concerns were raised that the episode implied that autism should be cured, which is not how many in the autistic and neurodivergent communities view their identities.
[04:13] I want to take a moment to clarify my intent, acknowledge the impact, and engage in a thoughtful and respectful conversation. This is especially challenging because, as you probably know or would expect, there are thousands of people who listen to these podcast conversations. So while I do view it as a conversation because I do take all of your feedback very seriously, I also want to share that it is really challenging recording these episodes because when I'm having a one-on-one conversation with someone, I know so many more details about their own personal situation. Right now, there are thousands of people who are listening to this episode, and each person's situation is so unique.
[04:50] So I want you to understand that the goal of this particular episode about autism was not to promote the idea that autism itself should be eliminated or fixed. The idea was to explore whether mast cell dysfunction might play a role in certain physical or behavioral symptoms experienced by some individuals diagnosed with autism. I respect and support the neurodiversity movement, and I'm neurodivergent myself. I have ADHD that was diagnosed in adulthood and something that I continue to struggle with. I also recognize that autism is not inherently pathological. Many autistic individuals see their neurotype as a core part of who they are, not something to be treated or changed, and I honor that perspective.
[05:35] Autism is a wide spectrum that includes a broad range of neurologic experiences and support needs. It's not a straight line from more to less autistic. It's more like a constellation of traits that show up differently in each person. This diversity makes it especially important not to generalize or assume that one size fits all.
[05:54] So in this episode, we wanted to talk about supporting physiology, not erasing identity. Exploring immune system dysfunction, sleep disruption, gastrointestinal issues, or behavioral changes is about addressing underlying medical issues, not changing someone's identity. Seeking symptom relief does not mean trying to make someone less autistic. The episode was intended for individuals or families who are actively seeking solutions for specific medical or quality of life challenges. Everyone deserves access to care that makes them feel better if that's their personal goal.
[06:31] As we're going to discuss in the next segment, labels are very complex. The autism diagnosis often includes people with very different biological underpinnings. Some people may have conditions like mast cell activation, mitochondrial dysfunction, or chronic infections that can contribute to their presentation, and addressing these may help reduce suffering. Autism spectrum is still a commonly used and medically recognized term, but I understand that it's not perfect. I will use it at times to reflect the diversity of experiences, not to rank or minimize them. I aim to use inclusive, respectful language and always welcome feedback if I fall short.
[07:09] Even though the intention was to explore a medical hypothesis, I understand that the language or framing may have caused harm, and for that, I'm truly sorry. I'm committed to listening and growing, and I appreciate those who took the time to share their concerns. I invite you to continue the conversation. If you have thoughts, experiences, or perspectives that you want to share, I welcome them. This podcast is a space for evolving conversations, and your voice matters here.
[07:27] I do want to remind you that as someone who has hypermobile EDS myself, like many of you, I am very sensitive. So when you are sending in your comments, I really would urge you to focus them on solutions as much as you possibly can. I think that would be really, really helpful and so very much appreciated.
[09:20] Okay, now I want to address some of your concerns about the Road to 2026 episode and clarify my position about the importance of diagnosis. This is important to talk about because the diagnostic criteria for the most common type of EDS, hypermobile EDS, are being reviewed and updated with anticipated changes late 2025 or early 2026. This process affects clinicians, patients, and researchers, so it's important to discuss this early and often.
[09:50] Diagnosis matters for many reasons. A diagnosis can be essential for disability benefits, school or workplace accommodations, and insurance coverage for needed care. It can help people access specialists and guide more appropriate treatment plans. It also provides validation and a name for what you've been living with that can help counter medical gaslighting. At the same time, not everyone needs or wants a label. Some patients focus more on symptom management than on a formal diagnosis. For others, pursuing a diagnosis can be emotionally draining, expensive, or even harmful if they encounter dismissive providers. Please know that all of these perspectives are valid. My comments were never meant to downplay the value of a diagnosis. I recognize that the need for a label varies greatly based on personal circumstances, medical needs, and individual goals.
[10:40] With regards to the Road to 2026, criteria updates are a rare and significant opportunity to improve recognition and care for things like symptomatic joint hypermobility and connective tissue disorders like EDS. These processes, especially with clinical diagnoses, are very challenging and usually involve international experts, patient advocates, and researchers. Talking about this now helps prepare the community for changes and gives us a voice in the conversation.
[11:09] Thank you so much to all of you for your incredibly valuable feedback. I started this podcast back in 2020 because I have hypermobile EDS, and as a physician treating people with hypermobile EDS, I realized that there was such a huge knowledge gap between what was available to patients and the amount of knowledge that actually some clinicians had and some researchers had. I wanted to try to make that information more accessible for people who are suffering from these conditions.
[11:39] At the same time, it's really challenging because no one has all the answers. So please understand that while I bring experts in from all across fields, none of us has all the answers and we are all just trying to do our very best. We are all still learning, and hopefully we will continue to get a lot more research in this area because there are so many people that are impacted by these conditions.
[12:00] I get messages from so many of you every single day, and it's so appreciated because you are the expert in your own body. And I really learn from my patients, my clients, and my listeners. This is a wrap on Season 5, and I look forward to seeing you back in Season 6. Thank you for continuing to be here with me on this Bendy Bodies journey.
[12:21] I really want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex conditions. If you'd like to meet with me one-on-one, you can check out the available options on the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at Hypermobility MD. You can find Human Content, my producing team, at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.