Episode 158 - How To Deal With Others Who Don't Understand CFS

How to deal with people who just don't get chronic fatigue syndrome? In today's video, we're going to discuss exactly how to deal with people who just simply don't get what you're going through. Now, I just want to say before we get into it, this is super, super hard. What you are going through with chronic fatigue syndrome is probably one of the hardest things you'll ever have to experience in your life. And one of the hardest things that happens that no one really talks about is the secondary suffering that comes with having chronic fatigue syndrome, which is people around you not actually understanding what you're going through. It can be actually so humiliating, it can be so frustrating, it can be devastating when your loved ones around you think that you're making this up, think that you're being a hypercontract. You know, in the 1970s, chronic fatigue syndrome was said to be a yuppie flu and the hypercontract flu. And you know, that couldn't be further from the truth. You know, what you are going through is 100% real. It's classified as a neurological illness with the NHS in England. And truthfully, unfortunately, it's an invisible illness. And so it's not like you're wearing a cast with a broken arm and everybody, when you're walking down the street, people can see the broken arm and the cast and go, "Oh my God, I feel so sorry for you." Are you okay? And the problem is, most people day to day don't actually see your pain. They don't see you suffering in your bedroom, in isolation on your own. And this is the secondary suffering that is so freaking devastating and so difficult. When you're going through the primary pain, which is the actual symptoms and suffering of chronic fatigue syndrome. Things like brain fog, lefog, extreme fatigue, nothing out of, you know, do the things that you want to be able to do. And that's the hardest part. When someone has known you for a long period of time as a certain way, just like you knew yourself before you got sick, those people still expect you to be the same person that they knew before you got sick, you got sick as you are now, which is a lot of pressure. And a couple of things that I want to share with you in terms of tips to help you navigate this at the end of this video. I'll share with you three tips that will really help you, you know, help them understand what you're going through, but also help alleviate the unnecessary pressure that you're experiencing from trying to get people around you to understand. Firstly, if you've never had chronic fatigue syndrome, it's going to be very hard to understand what it really feels like. And the hardest part is, you know, you can't really force someone to understand how you're feeling unless they've been through themselves. And so the first point of call is to realize that unless they've had it, they're not fully ever going to understand what you're going through. They can be compassionate, they can have empathy, you can teach them knowledge and learning to help them understand better. But knowing that, you know, imagine if you never had chronic fatigue syndrome, you would just be living your life. You wouldn't even think about this at all. You would give it no thought whatsoever. And so coming from that place of understanding and realizing that, you know, potentially they're not being mean, they're not being, they're not trying to be hurtful. They just simply don't understand because they don't know what it's like, just like you wouldn't understand you wouldn't know what it's like unless you're experiencing this first hand. The second piece is awareness. And with the second piece is really the lack of awareness in the community around chronic fatigue syndrome is really bad. You can still go to a party these days or a gathering. And if you mention the word chronic fatigue syndrome, someone will usually say, isn't that just like depression, like they're just making it up and they're just depressed or they're just lazy people? I've been helping people for the last 17 years and with thousands of people over in 78 countries. And I've never met a lazy person with chronic fatigue syndrome. You know, it's the complete opposite. But the problem is, again, the culture and, you know, 21st century living kind of suggests, well, you know, that person's lazy because they're asleep all the time or that they don't leave the house and they're tired. And it can be a real kick in the guts when, you know, your friend says, oh, but I'm tired all the time too. And it's like, no, there's a difference between chronic fatigue syndrome tired and normal tiredness. And really what we want to make sure and, you know, take that pressure off is by realizing that they're not trying to be mean on purpose, right? And if they are, you need to get rid of them. They're toxic people in your life that you don't need that in your recovery. But for the most part, people actually do care. It's just that they don't understand. And unfortunately, 21st century living has kind of taught them that, you know, if you're, you know, if you're sick or you're laying in bed for a long period of time, you're just lazy, which couldn't be further from the truth. And you could even say and mention this video, share this video with them and say, hey, you know, this guy's been working with people for chronic fatigue syndrome for 17 years. He's never met a lazy person in chronic fatigue syndrome. It affects, uh, doers, achievers, type A personalities, uh, perfectionists. People will actually want to squeeze all the life out of life. And, you know, and unfortunately, they can't run out of it if they're going through something like chronic fatigue syndrome. The third piece to really help you help yourself through this isolation is two last key points. One, surround yourself with people who get it and understand that that is confirmation. That is really important that you are not on your island on your own. And you can be on an island with a bunch of people who are going through the same thing, but are always, but are also moving towards where they want to go. That's the first most important step because once you realize and you take away the unnecessary suffering of isolation, you go, okay, great. Like I now I don't feel alone. My problem shared is my problem halved and I can start to move forwards and focus on recovery. The second piece is to actually stop over-explaining yourself. This is actually a recovery tip. This is about you owning your truth and realizing that what you're going through is real. You don't need to make up excuses every time you can't go to an event or you feel this pressure of over-explaining your situation or your condition, which is only making you feel worse, you feel more exhausted, and the other person going, God, I don't want to keep hearing the same thing over and over. Here's what you say instead. Rather than saying, oh my God, I'm so sick and I'm so sick all the time and I'm not getting better and my life's horrible and my life is over, which is valid and fair to feel that way. I want you to switch your focus to this. Simply say, if someone says, how are you? Or you can't make an event, you can say, hey, I'm doing okay. Thanks for asking. I'm working on my recovery right now. Some days are harder than others, but I'm working towards improving my health so eventually I can get better. And then that is it. Full stop. You don't over-explain, you don't make up excuses, you just share your truth. Full stop. And what's what happens? It might feel really weird to start with because you're so used to overtalking, but that's actually mentally rehearsing how bad you are, which actually doesn't make you feel good. Imagine if you just simply said, hey, thanks for asking. I'm doing okay. I'm working on my recovery at the moment. Some days are harder than others, but I'm moving in the direction of where I want to go and eventually I want to get healthy so I can start living again. That feels so much lighter than, oh my God, today is horrible. I'm in so much pain and my life's over and you know that feeling because you've probably done it before and it doesn't feel good. And so we call this the art of enrollment, how to express yourself in an empowering way that actually feels good for you and the other person and expresses boundaries. And like I said before, if there's people around you who don't care or don't want to know, you can still express your boundaries, they say, hey, it really hurts that, you know, you think that I'm making myself like I really am working on my recovery. It would mean so much if you supported me on my journey with me, even if it was just by listening for five minutes or you know, sharing some time together without talking about what I'm going through will be helpful. And of course, if people mainly express that boundary, hey, I don't like when you talk to me like that or say things like that, can you stop saying that please? It's not helpful. And again, boundaries is an important part of recovery, you know, expressing where you're at, being in a powered state that can help you focus on your health and well-being. And lastly, I want to share with you a crazy story. So I was on a phone call many years ago with this lady Jenny. And she was from Canada. We had a fantastic conversation. She reached out. She wanted help with her recovery. And we spoke about baseline and nutrition and getting her restorative movement plan to help recognition her body and basically get a strong and healthy again. And at the end of the call, she was about to join the program, our mentorship program. And she's like, oh, this sounds amazing. I want to join. I want to join. And then as soon as it was time to join, she goes, I don't need I can join. And I said, well, that's a bit weird. Like you just said for the last 40 minutes that this is this is what you need. And this is what you need help with your accountability, consistency, all of that. And she's like, I can't join and I can't get better until my husband fully understands me and my situation. And I was like, well, we're in a bit of trouble there. And she was like, what do you mean? I'm like, well, you're putting your recovery on hold because you believe that your husband needs to understand you in order for you to get better is a total lie. Now, of course, would have been nice for your husband to fully understand you absolutely would be amazing. But you, believing and really putting that in front of your recovery saying that you can't get better until he fully understands you is like you potentially waiting another 20 years or potentially waiting for your whole life because you may never understand you fully with what you're going through. And she realized in that moment, oh my god, like of course, like that makes total sense how silly and she ended up joining and eventually getting better, but you can see how, you know, thinking that getting people to understand you is the most important thing in your recovery is counter-intuitive to actually getting better. You don't need everyone to understand you to get better. In fact, the only person you need to understand is yourself to get better. Of course, it would be nice if you had the most supportive family and people who loved you and supported you and cared for you. And if you've got that, amazing, give gratitude and thanks to those people. But if you don't have that, just realize you don't need that in order to get better. It would be amazing and it would be so nice. And at the same time, you don't need everyone around you to understand you in order for you to get better and how great to know that is true because it means you can start on your recovery today. If this video was helpful, hit the like button, comment below, your biggest takeaway. And what's been most helpful for you to move forwards in your recovery despite the lack of understanding and awareness in the world on chronic fatigue syndrome.