 Over the past decade of my life, I have spent literally countless hours in doctors' offices hearing everything looks fine. We still don't know what's wrong and being referred to another specialist. I won't bore you by recounting all of the different things I have tried and all the specialists I have seen, but I can tell you that if you were to add up all the hours in my life, it would be a substantial percentage that was spent trying to find an answer to what is wrong with my body. If you're new to this channel, hello there, my beautiful internet friend. Welcome, it is lovely to see you here. I expected to be making a video today titled something like, finally a diagnosis, exclamation mark, exclamation mark, but instead I have something very different for you. About a month ago, I released a video in which I mentioned I finally thought I had a diagnosis, but I wasn't ready to share that yet. The reason I wasn't ready to share that yet is because I was emotionally processing it, but also because they were running one final test to make sure that they were confident that this was my diagnosis. For the majority of my life, I have never been physically okay. I am in pain every day in various parts of my body. I'm fatigued a lot. Sometimes I'll wake up and feel like I was hit by a train when I did literally nothing the day before. I always have abdominal pain that I've had exploratory surgeries for that never had an answer. I deal a lot every day with headaches and chronic migraines, which mean they get 15 or more every month. There's a lot of other random little symptoms thrown in there that have always seemed so unrelated and random and bizarre. When I get sick, I get really sick. But the problem with healthcare in America is that they refer you to a different specialist for basically everything. So when you have a complicated diagnosis, it can sometimes take literally years to ever get to someone who is actually willing to look at the whole picture. And that's definitely been the case for me. And last month, I finally made it to the right doctor to see. He happened to be a rheumatologist who looked at the scope of my history, everything put together and said, you have fibromyalgia. That is what everything points to here. However, because fibromyalgia is diagnosed by ruling everything else out, there are a few more tests I want to run just to make sure. But I am confident that this is what you have. And so I had a beautiful emotional breakdown that day. I spent time in my car just sobbing in tears after the appointment because I'm like, oh my God, I'm not crazy. Like there is actually something wrong. And it's terrifying when something's wrong. It's scary when it's something that is not curable that you will deal with the rest of your life. But I have spent the last decade of my life dealing with something that didn't even have a name or a face I had no direction to go in. And was sort of just fumbling my way through the waters of American healthcare, which is a nightmare, trying to find some kind of relief or answers. And yesterday I had the appointment to follow up on the results of the test and receive what I thought would kind of be the official diagnosis. However, that's not at all what happened. What I heard instead is that it's a presumed diagnosis as in we're gonna treat it as if it is that, but it's not actually diagnosed. He said he's confident again that I do have it, but there's one of the major kind of implications of it that I don't really experience that often. So he's not willing to really call it that just yet. We're gonna keep looking into different things. And if you don't have a history desperately, I know I've used that word before in this video, but I mean like desperately looking for answers and thinking you finally found it, having a doctor say, hey, I think you probably have this. We're gonna treat it like it is. But you know, I'm not actually gonna call that that because I'm not entirely sure that it is what it is yet. That might seem pretty insignificant. And like, okay, well, that makes sense. But when you think you have an answer when you're someone who has dealt with shit for many, many, many years, it's devastating. I know that sounds like a really big word, but here's the thing. I've thought a lot over the last month about what a diagnosis actually means. I meant to make a whole separate video about this, but we're gonna fit it into this one. Being able to have a word, a name for what you are going through allows you to kind of wrap your hands around it and be like, okay, this is what I'm dealing with. I am dealing with fibromyalgia. I am dealing with PTSD. Like I'm not crazy, right? And I felt crazy for so long because I would go to doctors and urgent cares and emergency rooms and have everybody say everything looks fine. You're a perfectly healthy 20, 25, 29-year-old. And I feel like I was a waste of people's time as I was really suffering and having a very difficult time existing in this body and feeling like a fraud, feeling like maybe I am nuts, having people suggest that maybe it was all in my head. After I'd been hospitalized for five days, they just suggested it was like, maybe it's just anxiety. Maybe you should talk to someone, you know, about your brain. Because with a few days of testing, we can't find anything wrong with your body, which means, I mean, we know everything in the world, so you just must be crazy, right? Like that is often the response when you are someone who repeatedly goes to doctors for answers and they can't find them. In no way am I downplaying the very real connection that things like anxiety, PTSD, depression, all kinds of mental illnesses can have on your physical body because they do. But those are things that I have examined extensively, received there before, found solutions for and got a lot better for. I think another reason why it can be so helpful to have a diagnosis is because it lets you take it seriously. What I mean by that is over the last month, I was kind of walking around with the assumption that I have fibromyalgia. So I really researched it, I looked into it, I looked into what helps and what doesn't, and started doing those things. I started actually allowing myself the space to take care of myself because I'm like something is actually different about my body and I can respect that. I can make more time to rest. I can intentionally cut out stress in my life because that's what my body needs and it honestly helps. I can make time every day to stay active and move because low impact exercise really does help me feel better. And so I started doing all these things that were really good for me. I started doing like really taking time for myself and taking care of myself and not feeling horrible about the fact that I wasn't functioning like a normal person. Like if I had a lot of pain or I was really exhausted or couldn't think straight, there wasn't like all this guilt and blame of like you should just get over it because I'm like something's wrong and I can respect that and I will allow myself the space to take care of myself through this. And obviously those are things that can be done regardless of having a diagnosis or not, right? But I think the reason why I have such a hard time not being diagnosed is because it becomes so difficult to trust yourself. It becomes really difficult to advocate for yourself. It becomes really difficult to be like these are the things I'm experiencing and they aren't normal because those things don't make sense to other people. I guess at the end of the day, I feel like the very real physical experiences that I have are not valid because they can't be put into a category. And when I say that out loud, I know that that's not actually true, but it sure as shit is how it feels. It feels crushing. It feels like I'm just a crazy person. It feels like I must be making it all up because it doesn't show up on a scan anywhere, right? Like when I thought I had this word for it, it became exponentially easier to have compassion towards myself because prior to that moment for 10 years, I was just dealing with a lot of stuff that no one could ever figure out. And so I forced myself to power through. Oftentimes I wouldn't pay attention to very real signals my body had or give it the time needed to recover from stuff because I'm like, it should work. It should work. Like nothing's wrong with me. No X-ray or MRI or CT scan or blood work or whatever else has ever shown anything wrong. So be a freaking normal person, Joe. Just do it. Just power through. Ooh, I just spilled coffee on the couch. I don't care today. I feel like I definitely shouldn't need a label to take myself seriously. And that's probably something I should address in therapy, but it's hard to know or even sometimes want to take care of myself when I don't know what's wrong. And here's the thing. Getting diagnosed, like getting a diagnosis of you have fibromyalgia and incurable condition that makes life kind of suck for people. Like that's not good news. Like I understand that. It's not good news. It's not something I'd celebrate, but it was something that I was so excited to hear when I thought that was the answer, right? Because it was an answer and having an answer is better than not having an answer in most situations, at least for me. I think another big perk of having a diagnosis is that other people take you seriously and perhaps that is one of the biggest things here. Like I think that the biggest issue is actually having a word for it would help me. But right below that is having something that other people could understand rather than saying I honestly feel poorly all the time in varying degrees. Some weeks I'm okay. Some weeks I am completely disabled. Not by my leg at all, but by the things that my body does to me, how I feel, how sick I feel and exhausted and in pain. I just can't think straight, all of that. Like being able to say I have this disease which is a valid thing, which is a legitimate thing, which you can look up, which you can read about, which has actual symptoms that I have. Like it's flaring up. That's the reason why I'm feeling this way. That's the reason why I can't make it that's the reason why, whatever. But not having like a package to deliver that to other people with. Talking to doctors in future situations and being like, and I also have fibromyalgia that would be like, okay, I get it. That means you probably experience these things instead of me having to be like, yeah, let me go through my list of symptoms that's about a mile long and have you get bored by the time I'm done. People, myself included, understand things a lot better when there is a title or a label for them. It doesn't mean that it's less valid if it doesn't have a name, but we sure like names and labels for things because as humans it helps us process and cope and understand information. And here's the thing, I trust the doctor I'm with. I understand that he's doing what he's doing for a reason. It's very probable. I probably do have fibromyalgia. We're gonna treat it like that. At the end of the day, this is not the video I wanted to make, but I did want to share a little bit about what it feels like to continue to be undiagnosed as someone who is chronically unwell. And we are treating this as if it is fibromyalgia, like we're gonna try to address a few different things, a few different ways, but for the time being anyways, I remain undiagnosed, but what I'm gonna try to do, here's where I like try to put a positive spin on things, even though I am not feeling positive at all in this particular moment. I'm going to attempt to carry what I felt the past few weeks forward with me of making space to actually take care of myself. And that's hard to do because there's a part of me that already feels my brain slipping back into like, well there's nothing actually wrong with you, Joe, so just do it, just do all the things, just completely ruin your body because you feel like it should work a certain way and it doesn't, but I'm going to do my best to acknowledge that voice, let it say what it needs to say in the background and not listen to it and actually continue to do the things that I know help me, that I know enable me to be able to do more by resting more, by actually caring for myself more, by investing in personal stress management and removing large sources of stress from my life, by staying physically active, by experimenting with different diet things that could potentially help. So for now, I shall simply focus on what I can control because that's all any of us can do anyways. Thank you for listening. Really, thank you for listening. Thank you to my patrons for supporting me during this time. I truly appreciate each and every one of you and your generosity and my little community there. Thank you. To you watching this video right now, thank you for spending a few minutes out of your day here with me today. I do not take your time, your listening ears for granted. Could be anywhere else in the world doing anything else and you chose to hang out with me for a few minutes and that's really darn cool and means a lot to me. Thank you. I love you guys. I'm thinking about you and I will see you in the next video. Bye guys. 🎵 And her from the sky all about... 🎵