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Show Notes
Living with ME/CFS, Fibromyalgia, Long COVID, POTS, post-viral fatigue syndrome or related conditions can make dealing with healthcare practitioners challenging — especially when you're experiencing complex or unexplained symptoms and someone says, "I've never seen that before."
Does that mean they don't believe you? That your symptoms aren't real? Or that you have some kind of mystery illness that nobody understands?
For people experiencing chronic illness, feeling dismissed, misunderstood or not believed by healthcare practitioners can be distressing, particularly when you're already struggling to find answers and appropriate support.
In this video, Dan Neuffer addresses the challenges of navigating healthcare appointments and dealing with practitioners who may not understand your symptoms. He explores what comments like "I've never seen that before" can mean, how to approach difficult healthcare interactions, and what to consider when seeking help during chronic illness recovery.
Dan also discusses the importance of working effectively and safely with healthcare practitioners, including the role of medical evaluation and addressing physical dysfunctions and symptom triggers as part of the ANS REWIRE recovery approach.
If you've ever felt dismissed, struggled to get your symptoms taken seriously, or wondered how to find appropriate healthcare support, this video offers a different perspective on moving forward.
QUESTION FOR THE COMMENTS: Have you ever been told "I've never seen that before" by a healthcare practitioner? How did you respond?
Timestamps
00:00 When a practitioner says, "I've never seen that before"
00:53 What are you looking for from a healthcare practitioner?
01:15 What it actually means
01:36 Disclaimer
01:48 Understanding what your practitioner is telling you
03:05 What helpful practitioner support can look like
03:31 Why re-engage with healthcare practitioners during recovery?
04:10 Why appropriate medical evaluation may be critical04:28 What to do when you feel misunderstood
05:05 Explore the recovery framework in CFS Unravelled
Links
Here is a link to the ANS REWIRE program.
Transcript
There's something really unique and strangely wrong with you, and obviously this probably means that you're not going to recover, right? This is really unhelpful, and I just wanted to do a quick video just to speak to this a little bit, just to help you change how you think about this, and to take a few really important steps to ensure that you can move forward with your recovery and don't get stuck in a situation like this.
The first thing I would say is, why do you go to see someone? You see someone because you want to get help. So you're not there to convince anybody of anything. You're not there to educate them. You don't need them to believe you. If they don't believe you, that's fine, we just move on. But, you know, whilst your mom might have said that you were special when you were little, let me just point out to you that when it comes to your health, you're not special.
You're not unique. So when somebody says, " I've never seen that before," what they're really saying is they have not seen that before. And so the issue is that they have not seen enough patients or patients with your type of illnesses, or maybe they haven't taken note. It doesn't matter what kind of practitioner this is, whether it's a medical doctor, a chiropractor, osteopath, naturopath, massage therapist. It doesn't matter what they are. If they say they haven't seen this before, that's their experience. It's not a reflection on you.
Because there are literally thousands, probably millions of people who have exactly the same challenge and symptoms and experience that you do So be mindful that you're there to get help, and if they can't give you help because, you know, most practitioners make a diagnosis. You know, even a massage therapist will say, "Well, tight hamstring," and then they're going to massage your hamstring, right? It's a logical thing to do. We know what's going on, and here's what we think we can do to help. But if the practitioner really doesn't know what's going on and doesn't understand what you're experiencing, well, they're probably not gonna be able to help you.
Now, if, on the other hand, the practitioner says, "Yes, that's ... You know, let me work it out. Let's do some more tests. I'm going to talk to some other people. Let me refer you onwards," fantastic. You know, you're in good hands. You're getting some help by someone who's trying to do their best. And if somebody says, "I've never seen this before," and there's a big pregnant pause, it doesn't make them a bad person. It just means that they're not the right person to help you.
In ANS REWIRE, we really talk a lot to people about re-engaging with practitioners because most of us find that we go to practitioners, whatever kind of practitioner, they don't cure us, and so we go, "Pff, there's no point," and we give up. But once we understand how the physical symptoms trigger our nervous system and how it's important to address these physical dysfunctions, and we understand how to do this in a way that supports our nervous system for recovery, then re-engaging with a practitioner of any kind can be really, really helpful and important.
And if you haven't engaged at all with a doctor, it could be life-saving or critical because there's all other kinds of things that might be going on that you might not even know about. So we really believe strongly in working with healthcare practitioners effectively and safely. And so that is what we do in ANS REWIRE.
We educate you on how to do that. But I wanted to just do this short video today just to remind you that there's nothing strange or unique about you, and you don't need to prove anything to anybody, right? So accept help where it's on offer, and when not, move on to your next best opportunity for healing.
