Episode 3: Self advocacy while living with sleep disorders

In this episode I give an insight and a few tips on how to advocate for oneself at work, in school or even while seeking medical attention for sleep disorders. 

Transcript

SPEAKER_00 0:08

Hello everyone and welcome back to this platform. If you're new here, my name is Mirianne and I am the host here talking to you talking you through the world of sleep. I'm glad you're here and have chosen to spend your time listening to me. On today's episode, I'm going to talk about something that affects many people and yet is still this deeply misunderstood. And that's uh sleep disorders. Living with a sleep disorder, whether it's insomnia, sleep apnea, ecolepsy, idiopathic hypersomnia, restless leg syndromes, or any other condition in relation to sleep, it can be very exhausting in ways that go beyond just being tired. It can affect your mood, memory, relationships, your work, and your overall quality of life. The hardest part is actually the feeling that you constantly have to explain yourself or prove that what you're experiencing is real. So today I hope I can learn my voice in to those who are affected and probably never know how to start, especially in educating those around them and then lightening them in regarding to uh the sleep condition or the disorder they would be uh they might be suffering. And also I hope that those who might still be in the dark in regard to the world of sleep and sleep disorders would get some education and enlightening from this episode. The thing about sleep disorders that at times make it harder is the fact that they are invisible and the extreme part happen at night or you know in the confinement of your bedrooms or your house. So even the consequences of poor sleep, like brain fog, fatigue, whether emotionally or physically, or the grief that comes with losing normal sleep, it's those these all are invisible. So that's why self-advocacy is such an important skill in navigating this wilderness of sleep and sleep disorders, and this is mostly because the system doesn't always make it easy to be seen. So today I would like to talk about um what really self-advocacy is, how to ask for support from family and friends, how to advocate for yourself with doctors, navigating work, employers and co-workers, and how support groups and peer connections can make a huge difference. If you're listening and walking this journey, I hope you know that I see you, you're seen, and I'm lending you my voice through this platform to be able to air out your experience and also educate. I mean, by just sharing this clip to someone you feel they need to understand what sleep disorders or sleep the sleep condition you're suffering is, you can just afford them this and maybe they might get some education. Along the way, I will be going a bit deeper, or I'll be explaining how this there are the individual sleep disorders are so that um everyone can get that information here. So stay tuned and come along. Before we explore how we can educate others, something very foundational is actually believing in yourself. Many people spend years minimizing their symptoms even before shame and stigmatization comes in. Most of the time, you tell yourself stuff like, but everyone is tired, I just need to try harder, I shouldn't complain, or that maybe I'm not just trying hard enough. But sleep disruption and generally sleep disorders aren't personal failure or laziness or lack of motivation or discipline, it's a medical condition. Self-advocacy begins when you give yourself permission to take your symptoms seriously, like you would any other medical condition, you know. So one helpful step is learning about your condition, that is, understanding common symptoms, treatment options, and how your condition typically affects daily functioning. Another helpful tool, which I actually also mostly I think it's the first or the major tool I mostly refer to, is tracking your symptoms. This can be a sleep journal or diary, notes in your phone, or voice memos, or videos. In my previous episode, I talked about actually videos really helped us, myself, and my child and uh my family for that matter, uh get quick help or actually get the medical attention we needed. So pay attention to how many hours you sleep, or how often you feel sleepy, how rested you feel, the daytime symptoms like fatigue, brain fog, headaches, and mood changes, productivity at work, ability to socialize or care for yourself. Like those are some of the things that when you just document them or uh track them, they can help you understand your condition better. When it comes to advocating with family and friends, this can get a bit overwhelming at times. Often they mean well actually, but they don't understand. You might hear things like everyone is tired, or you don't look sick, or things, or maybe advising, have you tried going to bed early? All in good faith, you know. But one effective tool here is clarity. Instead of just saying I'm tired because there are different levels of tiredness, or it could come from different sources. You can try explain a bit what tiredness actually means for you. For example, my sleep disorder causes extreme fatigue and brain fog. Even when I get enough enough hours of sleep, it affects my energy, concentration, and emotional resilience, you know. Just breaking how you feel down into the exact um experiences that you go through or the exact elements that really really run in your daily um experience with the condition. It's also helpful to ask for specif specific support, you know, like be specific to people about what exactly you want from them or want how you expect the kind of support they're giving you to look like. People often want to help but don't know how. Like it may help when you can just say something like it may help when the plans you have are flexible, you know, like you know, like making them aware in advance that your condition does not allow or not really does not allow you that might need you to be more flexible. For instance, if you get so sleepy and you had a plan with someone at two, you might need to cancel or maybe to ask them to maybe push it into half an hour later or something like that, so that you can get your nap, you know. And um, it's not like and when something like that happens, you can also make them aware that it shouldn't be personal, like they shouldn't take you not wanting to meet maybe earlier or later, like a personal thing against them. And yes, boundaries are part of advocating for yourself. Like you can tell someone, I know you're trying to help, but that suggestion isn't helpful to me. By that way, you've set the boundary that they wouldn't be telling you everything or advice that could not necessarily help you at that point, you know. You don't need everyone to understand your condition, you just need them to respect it. Yeah. When it comes to healthcare providers, your goal should be to capture their attention and air out your needs within the first few statements while explaining your symptoms. The biggest challenge here is the time allocation for consultations. I I don't know how everyone else around the world could be experiencing this, but usually the times doctors have or allocate for patients at times are very, very short, and you could see at times maybe when they're under time pressure, they could be rushing through hearing what you have, and some of the symptoms are quite complex and can be hard to capture within that. So try to make it um a bit simpler because otherwise, it can be a very frustrating process, and also not provide all providers are well educated about sleep disorders. That's something we'll talk on a whole other day, but it affects how you feel um hard or taken seriously when you present your symptoms to someone. So here preparation is key and can make a big difference before your appointment. So you try mostly before you go to the doctor or you uh schedule your appointment to gather a summary of your symptoms, even write them down. It could be on your phone or on a notebook, wherever, where it can be easy to pull them out while you're uh explaining your symptoms to the doctor. It's also very important to note down the duration you have been experiencing the symptoms. Some people could even be saying as long as I can remember, or yeah, just maybe other two weeks, and that's why documentation is very important. So if you have a pattern or something you've already noticed about your sleep conditions, it's very helpful to note that down because at times it could help, not even at times, it's always going to be helpful to get the right diagnosis and therapy for that matter for whichever case you're presenting. And also mention what you've already tried if it's about medication or any other practices or whatever you already tried, whether it's worked or not, or uh you feel like you need maybe more something more to add on to that. Remember to um mention that also, and also remember to mention how your sleep issues affect your daily life, which actually, this is not even a matter of remembering, it's probably one of the main things that must have brought you up to that level of seeking um the medical attention of a uh physician. And if you're already on treatment and it isn't working, or the side effects are too severe, that's also very okay. And it's a very important information to give because that doesn't mean you failed, it just means that you probably might be needing an alternative treatment, and something I find very um, very I don't even know how to put it pleasing, or also very positive about sleep disorders, most of the time they are quite variable treatment options, and the most physicians, and if they are very knowledgeable about this, they will already let you know about the options you have beforehand or the treatment options, so that by the time you present such a case that this is not working, they will already take you through what other options you have, and yeah, you can also seek a second opinion. I mean, if if you're not really satisfied with what uh your provider is currently doing with you or to you, it's okay to seek um a different opinion from a different provider, and this isn't being dramatic or lack of trust or loyalty to your provider, it's also part of self-advocacy. In fact, I think most insurances even pay for that, or they cover the uh seeking of uh a second opinion on over the same uh condition or diagnosis. Yeah, so feel be aware of that and take advantage of such um offers. Um, your provider should make you feel hard, validated, and more also work with you as a partner through your journey to a better sleep. So if you don't feel this that they're hearing or validating your feelings, that's why, like I mentioned, it's also okay to get the opinion of someone else. The other area where advocacy can sometimes feel intimidating and even cause fear is at work because, yeah, most people really hold on to whichever position they have or uh the jobs they have, it could have been a dream job, and you you you were avoiding anything that could come on your path or spoil that for you, and at times also it could just be a matter of if you're feeling worried about being misunderstood or judged, some people could hold back from or could it could be a hard hurdle to go through um self-advocacy at uh the place of work. I hope that this episode will will help you or will set some light into how important the support from co-workers and employers can also still allow you to be um to stay productive and successful, and how at times actually not saying much can still be enough, you know. And uh living with a sleep disorder doesn't mean that um you you are no longer going to be productive or that you're less you're you know destined to be less successful. Of course, with the right support, most most mostly from co-workers, you can still be performing like any other person in the in the organization. So start by learning your right, and depending on where you live, sleep um disorders can qualify you for certain things we call them privileges because for instance you can be allowed or you can qualify to have flexible working hours, which could be like starting instead of starting at 6. If your um employer is aware, they could make your working hours flexible, but you probably maybe start later. You can also maybe have modified schedules or the possibility to work remote or hybrid, you know, because that allows also for uh your own flexibility with your time, and also you could get the privilege of reduced exposure to overstimulate stimulating stuff. You know, you don't have to share every detail with employers, maybe saying something like, I have a medical condition that affects my sleep and energy levels, and I'm requesting accommodation so I can perform my job effectively. That's what you can tell to your employer, to your co-workers, you can just mention that I manage a health condition that affects my energy. Just simple. You don't need to go to the details. If someone is interested to note the details, you can maybe go into that, but I mean for just the sake of um making them aware of what you're already going through, you can just mention that, you know, just a simple statement, and yeah, most people will already get to understand. Someone who is more curious might want to know more what the condition is, and if you're comfortable, you can share. So it's a good idea also to document such conversations, especially with uh employers or people at a higher authority than you in your work environment, so that any requests and agreements are made that are made are safe, you know, on like on region somewhere that you can refer to with that yeah, I talked to so and so, and they allowed me to work late, or I mean to yeah, to start working late, and you know, and such kind of stuff because at times you never know, things can change, or the the employer, employees could be changed, and something some information like that can be necessary to have to have them somewhere documented officially and um yeah, so like such like emails and yeah, emails actually are the most um ideal. Of course, you can have such discussions over coffee or lunch break, but make sure that the official parts or the agreements are are still communicated further. Follow it up with an email because it this will protect you and ensure that the help is stays consistent, you know. Another healing aspect of advocacy is really easy, realizing you're not alone, you know. This mostly can um yeah, through support groups, because that's mostly where people may be suffering with the same condition or already uh and having someone under their care with the same condition they gather, they share. Well, sometimes it could be online or in person, and such groups just provide um validation and at times practical advice, which you often wouldn't get elsewhere, like you wouldn't go to uh meet friends or a doctor and they give you such kind of information. So, and it helps also that while meeting up with uh or such or being around uh a group like a self-help group, you don't have to constantly explain yourself, and that can be really relieving and you know the validating at the same time, and through support groups, one can learn coping strategies, share resources, process grief and frustration, celebrate wins, and of course feel less isolated. Sometimes just having the me to, you know, just hearing that can be reassuring and in a very powerful way. I a couple of years ago there was this me to movement, and I think most people got more healing from just knowing they are not the only ones who've gone through what was in discussion than even the fact that they could finally speak up, you know. And that brought about a change which I think we all um those who maybe have access to. this what happened then uh can uh would remember and relate to so that's um one thing that um i i i would really encourage that those who feel like um like look for them they're mostly just online or on social media platforms I am currently getting very very insightful information and also getting educated as well in one of such groups where um I'm seeing how people are sharing information helping each other and every other time someone shares something or or there's a discussion going on I feel more enlightened myself so that's one thing I would really encourage and for those also walking this journey it's not you're not alone of course when you're in such groups and also when generally you get to meet others walking the same journey so to close on this um episode I would just like to remind or to call on that self-advocacy isn't about being difficult or demanding but rather the like survival actually and seeking to be understood and um so don't shy to advocate for yourself because at times it just takes speaking up to solve it and the kind of support you'll get whether from family friends coworkers is what you'll need to go through that you know and if this episode resonated with you please consider liking subscribing or sharing with someone you think might need it I mean it could be you could be the one directly affected or you could be knowing someone going through that or someone taking care of someone going through um any sleep condition or sleep disorder I will appreciate and if you're comfortable you can also leave a comment or share your story in the comment section you never know someone else might read it and feel encouraged and yeah sometimes in the comment section people also get to interact in a healthy way that learning from each other maybe someone could be knowing some information that I might even not know but at times in such platforms people also get to be very productive with each other so again um we're coming to an end of this episode thanks for spending your time with me here today and I hope that I'll we'll be interacting more and more over the comments and like I said and I will appreciate a share or a like or a subscription have a good day or night depending on where you are and till next time