It's easy for some to look at someone with chronic illness and see a normal person. Unless the person needs some sort of assistance device that can't be easily (or not so easily, but still manageably) hidden, the majority of us look perfectly healthy on the outside. In fact, those of us who've suffered chronic illness for extended periods have often made this our goal - to perfect the mask of normalcy. We learn to smile and look happy regardless of the amount of pain we're in, or how exhausted we are. We learn how to cover the dark circles under our eyes and the paleness of our faces with makeup so we don't look more dead than alive (and that isn't hyperbole.) Those of us with the tendency to bruise easily have outfits for all seasons that can easily hide bruises on our arms and legs that crop up just from leaning against something - hell, I've bruised just from someone gently patting my arm, before.
"You don't look sick" is something we all have heard at least once, and infuriating as it is to hear, oft times it's also our goal. We don't want to be judged, labeled, looked down upon, pitied for our illnesses. We want to get through our outing as efficiently and quickly as possible so we can get home and collapse upon the nearest flat surface in a mixture of pain and exhaustion, so worn out by something so simple that we often wonder if there isn't some sort of vampire attached to our necks draining our life force away every time we move with a group of invisible friends attacking every aching part of our bodies; and that's just the simple stuff.
The more complex stuff is... Well, more complicated. For many of us with digestive issues, even eating is a huge undertaking - we have to think about what we eat, because eating the wrong thing can have us doubled over in pain or so bogged down in added fatigue that the rest of our spoons will be used up for the day, and for some, eating the wrong thing can be deadly. In my case, eating -anything- often sends me to the bathroom within ten to fifteen minutes of my last bite; I have irritable bowel. It doesn't matter what I eat, portions of it just go on a fast track straight through. TMI? Probably, but it's a fact of life for myself and many others with the syndrome. Then there are the days I'm terrified to eat at all because my IBS is acting up so severely that even before I eat I can barely dare to let the bathroom door leave my sight, so how can I even think about adding fuel to that fire?
People with diseases like celiac or Crohn's or any other number of digestive diseases have a lot of dangers they face as well; in their case, whole sections of their intestines can become necrotic and need removed. Many of them wind up needing colostomy bags, at some point, from having to have so much of, if not their entire, colon removed.
Our bodies are at war with themselves every second of every day, yet on the outside, we look just like anyone else. That's the curse of the invisible illness. Then again, if we looked how we felt, people would be clamoring to rush us off to the hospital. For the overwhelming majority of us, our conditions are life-long, and most are progressive. For the conditions that aren't, often times other conditions will arise to make life even more hellish.
This is why I refer to people with chronic illnesses as Chronic Illness Warriors. We ARE warriors. We're fighting a war every day. With ourselves, with society, sometimes even with our doctors.
I know I touch upon a lot of men's issues lately, but really, men especially have a problem when it comes to chronic pain, namely with diagnosing conditions like fibromyalgia in which the majority of sufferers are women; most doctors won't even think to check a man for fibromyalgia trigger points, and men can be more hesitant about going to the doctor for things like chronic pain due to fear of seeming weak or less like "a man" thanks to cultural and societal expectations of masculinity. Men are expected to be strong and to just tough pain out. Same for fatigue. They'll generally figure they're just worn out from work or what have you, and aching from over-doing something at the gym or on the job, not putting two and two together to bring up to their doctor. It usually isn't until something REALLY goes wrong that they go in to the doctor, and in the cases of conditions like Crohn's or Lupus, amongst others, this can be extremely bad. Lupus is an autoimmune condition that tends to attack the internal organs, often the kidneys first; by the time it's progressed to the point you realize you have a kidney problem, treatment has to be aggressive. A former friend didn't even realize he had Crohn's until he nearly asphyxiated on blood in his sleep. He thought he just had IBS or something similar and shrugged it off. So, gents, please, if you have aches and pains, especially out of the blue, do some research. Check yourself for Fibromyalgia trigger points - it could well be that Fibro is more common in men than current statistics show, it just isn't diagnosed. If you're coming up positive for the trigger points, talk to your doctor, ask him or her for a referral to a rheumatologist if they aren't knowledgeable about Fibromyalgia. But I'm asking - no, begging - you... Please, take your health seriously. Don't try to be tough and all.. Alpha male. If something doesn't feel right, get checked out if you can do so. Catching these things early can make all the difference; it can mean getting the right treatments, or at the very least starting the process of finding the right treatments through trial and error. Often times, there is a lot of testing involved which is time consuming in and of itself. But if it turns out to be nothing more than a strain or sprain... At least you know. Stay on top of your health. Don't assume you're bulletproof, and don't feel like you're being weak or a whiner for going to the doctor because something hurts. That's what they're there for. You're just being proactive in your healthcare, and there is absolutely nothing wrong or weak in that. In fact, I'd say there's nothing MORE manly than having the strength and courage to get checked out and take care of your health, even if it turns out to be nothing, regardless of what BS society wants to try to make you believe.
The truth of it is, chronic illnesses attack everyone, regardless of age or sex, and we're all warriors, fighting battles unseen by society and by all but our closest friends and family... And even they often don't understand what we're going through. The only people who truly do understand are others who are experiencing it. They're the only ones who CAN understand. For healthy, able-bodied people, pain is temporary; it's impossible for them to TRULY conceive much less at all relate to pain that never fully goes away, at all, ever. This isn't their fault, it truly isn't, it's just a shortcoming of the human brain.
The fatigue... For most people, when they hear 'fatigue' they just think 'tired,' but it's so much more than that. Most people can relate to being exhausted. But they can go to sleep and wake up feeling better. They, again, can't relate to being exhausted, going to sleep, and waking up as exhausted or even more exhausted than when they went to sleep. But it's more than simply exhaustion; it's not just being tired, it's weakness, too, in the muscles and limbs, and a slowing of cognition. Tasks take us longer, our memory is faulty (I know very few people with chronic fatigue that don't have post-it notes or a notebook on hand at all times), we often forget what we're doing in the middle of doing it! And sometimes, by the time we're even close to being halfway done with a chore that isn't even very strenuous such as folding laundry, we have to stop and rest because our bodies just can't handle it anymore. We miss out on family gatherings, on fun occasions, hell, even appointments with doctors because we're simply too worn out to go. The curse of chronic fatigue is to attempt to wave at your life as it passes you by while you lay curled up in a bed or on the couch trying to give your body the rest it so desperately needs but cannot acquire.
To be honest, for me personally, my conditions would be easy as hell to deal with if it was just pain. I can manage my pain through coping skills and medications. But the fatigue on top of it is what makes it unmanageable. There's no prescription that will allow my body to achieve truly restful sleep and let it heal like a normal person's body would in a restful state. Sleep aids are often ineffective in treating chronic fatigue syndrome and most of them are habit forming, so even if they DO help in the short term (most of them don't help long term, even if they do short term) when you finally need to come off of them, your body will be so used to the medication helping it sleep, it can't get to sleep without it! So you then have to begin a weaning process which can take variable lengths of time, and is incredibly irritating and frustrating to go through.
I really do wish I could be like everyone else; out there working a shitty job for shitty pay so I could pay shitty bills and complain about all of the things everyone else complains about that I would LOVE to have to complain about. But... I don't. What I have to complain about... Only other Spoonies and really old people understand. Morning stiffness, achy joints and muscles, migraines, the inconsistencies of speed and comfort of motor scooters in stores, non-handicap people parking in handicap spaces - or even worse, in the striped zone beside them (SERIOUSLY STOP FUCKING DOING THAT!!! THAT'S FOR PEOPLE ON CRUTCHES OR IN WHEELCHAIRS TO BE ABLE TO GET IN AND OUT OF THEIR VEHICLE, ASSCLOWN!) - the cost of prescriptions and medical bills, how weird some of my latest test results are, how many pills I have to take every day just to have a semi-livable life...
Don't get me wrong, I'm grateful for what I do have. I know I could have it so much worse. But I'm also so incredibly..... Angry, and I suppose bitter, sometimes, when I see people complain about the things I would love to have to complain about because they don't realize how incredibly fortunate they are to HAVE those things to complain about. They take it for granted, completely. Sure, your job sucks. Sure, your pay is shitty. Sure, you have tons of student loan debt. But you -get to have a job.- You -get to go to school.- I don't. I can't manage it. Either thing. I've tried. It's too much, between the pain and the fatigue, and you have no idea how much I would love to have a shitty, stupid job at a fast food joint or answering phones somewhere, or going to school even if it meant I would have tons of debt to pay off. Or making a car payment or being stuck in traffic, because then I'd have a car and I'd be able to drive, and I could rock out to my favorite music while being stuck in that traffic that I can't do anything about anyway. Or paying rent/making a house payment... Because then I'd have my own place, and not be living at home with my parents.
If you're a healthy, able-bodied person, and you're reading this and have gotten this far... Please don't take this as me trying to guilt you. I'm not. Nor am I trying to have a pity party here. But, do me...and every Spoonie out there (especially the ones who are severely disabled), a favor. Look around you, and be grateful for what you have... Get up, run around a minute or two - literally run; most of us can't do that. Don't do it because I'm asking... Do it because I can't. Do it for me... And be thankful for that ability... But most importantly. Never take anything for granted. Not a single thing. Because chronic illness can strike at any moment, at any age, for any or no reason. I pray it never strikes you, Normie, I truly do.
But, if it does, the Spoonies are here for you. We are. We're a community - a culture, really, all of our own - that bands together to support and help one another, to help educate each other, to be there for each other. We'll be there for you, too, should a sleeping beast rear its ugly head. So never be afraid, and never feel like you're alone. I promise you, you aren't, and you never will be. We're here. We're strong, even in our weakest moments, we're strong. We're strong enough to help each other to our feet when we've fallen to our knees and feel we can't move another step. The Spoonie community has helped me so much, most without even realizing it. We'll be there for you should you ever need us, just like we're here for each other.
To my fellow Spoonies;
Thank you for being who you are. You probably don't hear that very much, if at all. So I'm telling you that now. You have so much strength, and so much courage, even if it doesn't feel like it. Just getting moving at all during the day takes so much of both of those things, I know it does, and you shouldn't undervalue that. Don't sell yourself short. Thank you for every Spoonie meme you share, for everything you post on Twitter, Pinterest, Tumblr, and Facebook that makes me smile, that makes me laugh, and that makes me nod with a smirk of agreement as I deeply relate to the sentiment. Knowing you're there, knowing you understand, and knowing I'm not alone... It's one of the most powerful feelings in the world. It's what keeps me going on the days I don't have anything left in my tank to keep my engine plugging along. You do. You keep me going. You're there, reading my blog right now, maybe, or seeing something I posted somewhere along the way on one of my accounts somewhere. We're connected, thanks to the Internet. I won't disappear. I promise you. I'll never give up this fight. I'll never give in. I'll always keep fighting in this never-ending war, and it's thanks to every one of you. I don't know who you are, I don't know your names or what you look like, but you keep me going, and I care deeply about you. Don't ever think for one second that no one cares; I do. I always will. Always. I'll never stop caring, and I'll never stop hoping and praying for pain and fatigue free days for you, and a cure for every single one of us, and, as always, maybe just a couple of more spoons, for a bit of fun, every now and again.
Take care, everyone, keep being who you are; love yourselves, even if you hate your body for what it's doing to you... Love the soul and mind within it - it's beautiful.
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