The Chronic Conundrum

Perhaps it is a twisted thing to sometimes wish I was sicker, but I would be lying if I said it never crossed my mind. Maybe then, I would receive the help I desperately desire.

Dramatic start, I know, but hang in there with me. This quote I found, floating across a corner of the digital realm, provides a rather nice introduction to the topic and connects well to my previous story about feeling stuck:

I think there's this weird phenomenon in life, specifically in the chronic illness community. It's a place some of us get stuck in - the in between. A place where you

are too sick to function in the 'able world' but at the same time you seem too healthy for the chronic illness world. You almost faint but you don't. You're always in pain but it's relatively tolerable. You're not bad enough to qualify for surgery even though you'd benefit. You forget everything but you don't lose time. Your heart rate is too high to be normal but not high enough to be critical. Your BP is low but not THAT low. You try to find answers but seem relatively okay to doctors, so they don't want to run more tests. You're stuck in a place where you almost wish you were sicker so you could get helpful treatment."

~ unknown, but heard and appreciated for their words

Of course, I rather live a healthy, fulfilling life but when you've been struggling for so long with little to no progress, it's difficult not to wonder, "maybe if I was sicker then I might receive more beneficial treatment and actually make some real progress forward." Side tangent, but my health journey has only further cemented my dislike for labels. I think labels can often cause more harm than good, despite their value for communication and comprehension. Personally, within the medical community in particular, I have found myself and my struggles/symptoms to be disvalued, discredited, or completely dismissed without a label or diagnosis, yet remarkably even more so when I finally did have one (and I know this is a common occurrence for many others). Just because doctors do not know what is wrong, or how someone could fit under an umbrella of a diagnosis, does not mean that person is not still struggling. Just because they don't appear "sick enough," mainly determined through broad testing or first impressions, does not mean they're not sick at all or don't deserve help.

Quick Ranting Intermission

Is it too much to expect that? In my mind, it should be an innate human behavior to simply see someone is struggling and to offer help however you are able to. I do not expect someone to solve all of my problems, or even to completely understand them because that is unreasonably impossible for anyone to fully comprehend the innerworkings of my mind and body. I'm still trying to piece it altogether myself! But no. I think we've become so disconnected and have retreated into this "self-centered/protective" mindset that we've, as a society, have turned distrustful in both asking for and in giving help. This fear of "being a burden" or of "inconveniencing others" constantly nags at my brain, trying to convince me that I'm okay and that everything isn't as bad or difficult as it seems, when in reality I genuinely need a little support. We all do, because well, we're human and that isn't a bad thing.

What is this concept anyways, of "being a burden" to others? Like I said before, we are a selfish lot (in an evolutionary stance, I understand self-preservation is natural, yet we are also a community-based species, but I digress); however, people [typically] do not offer to help when they are not in the position to give it. Some days I have less to give than others, but I still try to show up and do what I am able. Therefore, I don't think it is too much to expect people to help one another, and there shouldn't be any harm in asking either (hypocritical, I know but I am working on it, okay). I mean, I would hope the worst-case scenario would be that a given individual is unable help you specifically in the way that you need, yet they may be able to still help you otherwise (which is still better that being refused help altogether as mentioned before, and may even be better than expected).

I tend to have more respect for a medical professional, or for anyone for that matter, who admits to a lack of knowledge, skill, resources, or experience in an area rather than dismissing or devaluing someone who's vulnerably searching for assistance. It's alright to say, "I don't know, but I will find out and/or I know someone else who may be able to help." By Gods, sometimes all we need is a little compassion! More often than not, that is the best gift anyone can always offer. Alright, thank you for attending my Ramble Bramble, now back to the scheduled program.

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Honestly, I feel hypocritical saying this after how long it has taken me to believe it myself, but you are valid, and your hurt is valid. I used to rationalize everything I was struggling with by compartmentalizing it all as "less than others," with the belief that someone out there is dealing with worse than I am, so why should my problems matter? I'm sure others have also faced condescending doctors, or simply ignorant individuals, who have shoved your health aside as if it doesn't exist or as if you are the cause of it. That is to say, not everyone is purposefully mistreating you. Often enough, the people we care about or are closest to, may mistakenly dismiss or devalue your health/struggles simply because they do not personally understand what you are going through themselves. I think people who have had to hold onto a great deal of pain throughout their lives tend to lead with more compassion for others as well; we understand more than most how silently pain can linger behind forced masks, but also how beautiful the world can be from the smallest of moments, because we are grateful to be able to experience them at all. Such people tend to appreciate life so much more because they know how heavy the weight of it all can be. Yet we all still deserve a better, healthier life where we can focus on the 'human-being' part, instead of only surviving through each day as they come. Trust me, if you are willing to fight for yourself, then you will eventually find others who are also willing to fight for you too.

The [American] healthcare system is a shitshow, and believe it or not, when I finally received a diagnosis, I was fully dismissed more than ever (again, mainly due to lack of comprehension of said illness; therefore, many health professionals jump to disregard such as a legitimate illness rather than admit that they do not fully understand the scope of it). As much as I dislike labels though, it has led me to connect more deeply with others and to find a professional willing to take on my case. It has been a long, difficult (and still ongoing) journey, but I will not lie, I am extremely lucky. I have a family who supports me (even as an adult in this idealized, individualistic country); a father who is always at the ready to carry some of the weight from my shoulders, and who looks at every problem head on knowing there is a solution one way or another; a mother who is caring towards my hurt while navigating the frontlines of the medical system like a true Trojan warrior; two siblings who still see and treat me as the big sister I am (sometimes annoyingly so) while still meeting me where I am at; a cuddly puppy who follows me everywhere and is never far when I need a hug; a friend who listens to me wholly without judgement or without trying to "fix" me; a doctor who personally understands my situation and who is committed to helping me along my journey; and I have so much more to be grateful for. Not everyone is as fortunate as I am, and this is not to brag but to appreciate the good in life. I can only hope everyone can find at least one person to stand by their side. We all deserve a healthy, fulfilling life; however, we can still live a good life by finding the love and joy through those around us in this moment. I think choosing to live despite it all may be the bravest, kindest act you could do.

Admittedly, I was in a dark place for quite some time trying to vindicate being stuck in this "in-between." It felt, feels, like there's so little in my control and I couldn't distinguish the point of it all. But that's just it, isn't it? There is no point; no point other than to live, and to choose to live with everything you are is such a beautiful, radical thing. You will face challenging moments that will make you question it all, that will make you want to fall. It is only natural, and arguably essential, for the darkness to come with the light, so long as you do not let it consume you. You are more than your "darkness," but it is the dark that allows your light to radiate brighter, to lead you to appreciate life that much more because you fight for it and yet still choose to lead with compassion. So, it is here I leave you with this final thought:

To be human is to constantly shift through this place of "in-between," yet some of the most beautiful and transformational moments of life occur in the shift of seasons and in the shadows flickering among the light and the night. You have the choice of how you want to see and be a part of this world. Thank you for being here and I hope we cross paths again soon.