Invisible Illness: Live it in silence? or speak up for awareness?

There's a reason they call it "invisible illness". To most everyone around us, we aren't any different than they are. We look the same. We don't look sick. They don't understand how we can beg off of doing something, because we don't feel well, especially when, more often than not, we'd done the same thing just a few days earlier. We've gotten so well at appearing "normal" and well when we're around others, that we can be sicker than they've ever experienced, and still look like its just another day at the office, or another night out with friends.

If I called off work EVERY time I was sick or felt like crap, I wouldn't have a job. I'd probably only make four or five days a month. The only times I call off work, are during serious flare ups with my ridiculously high temps and the feeling of being hit by a mac truck. Even then, half of that flare up can find me sitting at my desk at work, not willing to give up those sick days, when I know that it CAN get worse. If its between sitting in bed at home or sitting in my chair at work, I'll be at work. I may look less than healthy and popping tylenol every four hours, and move a ton slower, but I'm there. In fact, if I have another flare up, no matter what happens, I'll probably still be here. Because my last serious flare up back in January, I used four of my six sick days, and I had to use the other two on trips to the Cleveland clinic.

Added "bonus" to our lovely "friends", not only can we burn through those sick days like none other, we also have the added expense of most often having a guarantee that we'll actually hit that seemingly reasonable insurance deductible in the first six months. Then there's the copays and other expenses that go along with it all. ER visit copays, dr visit copays (during a serious flare up, can be as often as three or four times a month, sometimes per dr...) with the occasional specialist thrown in for good measure, prescription copays, lab work fees, travel fees, this list could go on forever really... In fact, I hit my $750 insurance deductible by February 4th this year. Add to that the $100 ER visit copay and countless other dr and rx copays, and you can understand why I'm still making payments on my healthcare costs from over six months ago.

So: no more sick days, equals little chance I'll actually be calling off. Because we have no more paid time off, and with all the other added, and often unplanned/unexpected expenses mean we can little afford to take a day off (or several) without pay. All that to say, we're so used to being sick, that we're experts at hiding the fact that we are. Because if people around us knew what we were going through (not only wouldn't they believe it half the time) they'd get as sick of it's frequency and limitations as we do. So we grin and bear it. Or rather, we pretend nothing else is wrong and go on with our lives. We all do it to some extent. We may like to believe we're being open and sincere with those around us about how things are going and how we're feeling, but really, even we get tired of it.

I know I get tired of explaining myself and my disease. Not at the fact that someone cares enough to ask and wants to understand, but at the fact that I can actually sense myself going into "information mode". I've explained what I have, what I know about it , and how it affects me so many times, that I know I'm reciting a speech I've told countless times before, and it bores ME. I can only imagine how the person listening to me is feeling. You start to wonder if they'll regret asking, but hey...they did ask right? Eventually you just assume everyone is as bored at hearing about your "problems" as you are the whole experience. But is that really our best option?

I don't think there's an easy or clear answer to that question. Sadly, we're still in a world where employers, despite EOE laws and restrictions, are combing the net and looking for reasons you may or may not be a great fit. And even if you had to choose between two qualified people, we're still likely to be passed over because the other guy/gal will likely not be taking full advantage of the benefits package. Even in our personal life, we're tempted to stay silent, because we're afraid our friends (as well as those coworkers) will treat us differently. I absolutely HATE pity. Can't help it, but it grates on my nerves to see that look dawn on someones face when you know they're connecting with what it all means (or rather the worst case scenario playing out in their head) and they tell you how sorry they are. I think we all are super sensitive to it, but really, if you learn that a friend/relative/whomever got sick, etc don't you feel bad for them too? I have to remind myself that most peoples reactions are not pity. There's sympathy and the occasional empathy, and we can't take it too personally when a persons natural inclination is to apologize. I mean really, its not like they gave it to me...sorry, one of my pet peeves... :)

On the other hand, and this is the important part, if we stay silent about what we have and how it affects us, we're cheating ourselves as well as those around us. For starters, as much as we'd like to insist that what we have plays no part of who we are, we're not being completely honest with anyone. It may not be an important part of who we are, but everything that we experience plays a part in molding us into the person we become. It's just life. Our past and the happenings of our current circumstances all shape our personality and the way we act, react, and interact. We can't change that. It's going to happen. And if we aren't sharing the parts of us that make us who we are, no matter how insignificant we believe they are, or how little we wish to acknowledge them, are people really getting to know us? Do they really know who I am?

They certainly can't understand why I choose not to push myself physically, when it seems to all around me like I could do it if I really tried. They can't understand why I could possibly need to see a dr and visit a pharmacist so many stinking times a month, or how/why the top of my dresser or the bathroom counter looks like a shelf at your local walgreens. They won't understand why I can practically quote medical information, symptoms, drug facts, doses, interactions, what they're used for etc. Seriously, I'm a walking encyclopedia...be impressed. :) My sarcasm becomes more distinct and comes into play more often when dealing with uncomfortable topics or to joke around with my friends/coworkers or whoever when discussing the "facts". Its how I cope. Its a part of my personality. And if we're talking about how I'm doing and how I feel, and you can almost feel the sarcasm seeping into the conversation, don't feel bad you asked, don't feel like you have to stop asking. You should actually feel flattered that you're not getting the canned/recorded version of my explanation, and if you feel like you're getting it, don't be offended, I probably just feel like crap and am operating on autopilot.

I'll leave you with one last reason we need to share. A majority (probably most, but I'm gonna be careful here) of autoimmune diseases are unpredictable, play out differently in different people, and are occasionally rare. Not even Dr's and scientist have figured them out completely. There's still a world of unknown and if we keep things to ourselves, we're only hurting ourselves. We need to be open about things so that progress can be made. We need to be honest and share because while we may feel we're a walking encyclopedia, there are people out there searching for information, and we're the best informants out there. (And quite frankly, its healthier to let out our frustrations and feelings and sharing with those around us. Stress just makes things worse, and life has enough stress.)

I started this blog, because I was searching for a way to vent and let out what I was feeling about the mess that my disease was making of my life. I was holding it all in, and it was driving me crazy. I didn't think anyone wanted to hear it. I didn't want to push people away because I was complaining about my problems. So I created a place where I could unload and work through what I'm going through and what I'm feeling. But then it morphed into something else entirely. Don't get me wrong, if you follow my blog, you know I still do all that, but it's become about something more as well. I'm hoping that the time I've spent poring through information, and the things I'm experiencing, will help someone else going through the same things I am. Because we can't do this alone. We need to know we aren't alone, that someone out there knows and understands. And we need to be that source of information for them as well. If someone else can benefit from our hours of reading and sifting through library titles why shouldn't we share it? Believe me, I've loved finding that in others here as well. Its an invaluable tool.

So please. Don't be silent. Be aware and spread awareness so that you can benefit from someone else and be a help to others. Lets make research and progress in treating/curing autoimmune disease something that is as important to science as it is for us, and lets work at making it a thing of the past.

Uncertainty...the bully of Chronic and Invisible Illness

I have to apologize to Lana, I'm ridiculously behind in reading up on people's blogs, and unfortunately I'm back on July 29th of hers. So Sorry! I was just reading her post: "Being Chronically Ill Makes Me Question Myself" And all I can see is the parallel that holds true for all of us. Having doubt and uncertainty in ourselves and what we're able to accomplish is both personally devastating and creates roadblocks to what we're allowing ourselves to attempt to do in the future. Goals we've always had, and worked hard to meet, become less important, less achievable, as we look at ourselves and whats happening to our bodies and wonder if its even possible anymore.

Personally, I'm ashamed to admit, but I often see it as a "pass" for giving up, or not even trying. Or an excuse for why I didn't make it. It's hard to draw a line between what we physically can't do anymore, and what we can do, but have to do carefully. Having chronic/invisible illnesses not only affects our physical health, but our mental awareness of self, and our perception of what we're capable of. Quite frankly, It's not fair. But if we remain in the pity party, that I so often desperately want to throw for myself!, we're missing out on the beauty of what could be happening in our lives, and in the future. And what makes all of it worse, is the fact that others around us don't understand what we're going through. (See next post on Invisible Illness)

Our bully, uncertainty, tries to mess with our head and tell us we can't do it anymore. To quote Lana: "The truth is I know that am capable, but I don’t always know how able I am....when I am flaring I forget that I am able." I know I am right up there with her, and I'm sure many of you are as well. I can't begin to tell you how many times I've wanted to do something, but the words: if I weren't sick....runs through my mind as a disclaimer for why I can't. I'm afraid I won't succeed. I'm afraid adding one more thing to what I'm already doing will cause me to have a flareup. And I'm afraid to talk about it. I don't want others to know that I have other dreams, but I'm too afraid of what could happen to even try to accomplish them. I want to go back to school, I wish I'd never given up, that I'd pushed through to the end. That I hadn't picked a major based on things like: I can do this online, in my own time; or this degree will allow me to have a job with awesome benefits. I wish I didn't have to choose my job based on the insurance benefits. I wish needing insurance benefits didn't limit me in what I am able to do. I wish I had more time to volunteer. I wish I had more confidence in myself. I wish people understood.

But I also know, that if I let uncertainty win and take over all my decisions, that my life is not going to contain eveything I'd hoped for. I'll be stuck here, where I am, not going anywhere, or accomplishing anything new. I'm going to look back and be disappointed that I passed on so many opportunities. I'm going to see all those discarded dreams and wish I'd tried harder. I'm going to wonder if I would have been able to do it if I'd only tried. Thank you Lana, for reminding me that I am capable, and that I need to remind myself that I am able, and to try harder to shut out the little voice in my head telling me I can't do something. I'm going to re-evaluate what I want to do, and work on getting there. Because I know I can, I just have to work harder, and smarter to get there.

Solutions to the Double D (see below)

I've been complaining about my PCP for ages, but always figured, I hardly ever see her so its not that crucial to change it. And then I end up needing to see her, and I go through the whole: I need a new dr! thing again. So this last flare up, the one where she called some random rhuematologist, was when I decided to follow through with getting a new one.

Something you should know: (actually, I've probably said it in here somewhere) my mom's a nurse, so when it comes to my medical situations, she always has an opinion. Not just your random opinions that most parents have, because there's always some medical knowledge in said discussions. However, she's not consistent in sharing her opinion, most of the time she'll give it freely when I'm not looking for it, or when it goes against something my dr's and I decided. But when I'm actually LOOKING for her medical (or regular) opinion, she almost always tells me it's my decision and keeps her opinion to herself. (don't you love it when that happens??)

So I finally decide to go dr shopping, and my mom suddenly has no input on who I should see. She works with drs all the time and either knows a lot of them or at the very least knows of them, what they're like, etc... So I go trolling through random websites like healthgrades.com or ucomparehealthcare.com trying to find ratings, opinions or whatnot about local PCP's. I even went through the list reading their names out loud and asking about them...she only commented on the ones I thought had some promise and was going to look into..."oh, no...you don't want him/her..." sigh...

So I ask my rhuematologist (dr mak) for suggestions, and end up, not sure how really since I asked for suggestions, with a referral for a local dr who I guess is in the same network as dr mak. I go home and tell my mom "search over, going with dr...." and she responds quite emphatically: "oh...NOOOOO...you do NOT want HIM! He is the most arrogant, self-important, know it all, I've ever had to work with. You do not want to see him. He wouldn't be the right dr for your condition." Great feedback...little late in the game... Now what? I've got a referral and everything... No problem, I think...haven't called, just pretend it never happened and keep looking..." Two days later I get a phone call from his office asking me for more information for my file...apparently dr mak put everything through... great! (and by the way, she was extremely rude on the phone as well, before I even told her I'd reconsidered so I didn't feel too badly about this) So I inform her that I was still looking at my options and I would contact the office if I decided to go with them. I'm not positive, but I'm pretty sure she hung up on me....That door may be closed forever...oh, well...

So my mom starts joining the search and questioning the dr's she works with. Trying to find one she likes that she thinks will be the perfect fit for me. She comes home one day and this is basically our conversation: (comments in parentheses are my thoughts during said conversation)

Mom: I talked to one of the drs at work tonight and he agreed to take you on as a patient.

me: I'm sorry, what?

mom: he was at work, checking on a patient and I started talking to him about you. Well, when I first noticed him at the desk, he was talking to one of his partners, and I didn't want him to be around and volunteer for it, so I had to wait until he wasn't there anymore. But when he left I started talking to Dr. G. about your condition. I asked him if he knew anything about connective tissue disease (I interrupt)

me: I have mixed connective tissue disease, there's a difference...

mom: yeah, that is what I'd called it. (hmm...ok...) He said he didn't know a lot, but he could research it. I asked him if he only saw patients at healthsouth (rehab/therapy place my mom works at) or if he was taking on patients at his practice. He said he'd take you. There's just one thing....

me: (thinking back to earlier conversation about other drs she'd commented on, waiting for comments on personality, demeanor, etc) yeah?

mom: well, he's really, really good looking. (too shocked to speak....seriously? THIS is her hesitation point? what does it have to do with his being my dr?) Shana thinks he walks on water, says he's "dreamy". He's really good looking. (really starting to get uncomfortable with my mom, my MOM, going on and on about how amazingly good looking this guy is...awkward!...starting to wonder if there are ulterior motives...) Shana was all excited the other day, cause he touched her shoulder and told her good job....she came over and told Greg and me: He touched me!

me: why? is he single or something? how old is he?

mom: no, I don't think so...(I immediately feel better about "dr hottie", don't know about you, but I feel more comfortable with exams and other things with male dr's when they're married) he's probably in his 40's (ok, so she's not trying to set me up...why is his "good looking" such a big deal??)

me: so whats the big deal?

mom: I don't know, I just didn't know if it would make you uncomfortable...(really? why do I care...don't...no problem) I think he'd be a really good fit for you though. He's a great dr, really cares about his patients and goes beyond what he needs to, to treat his patients and be knowledgeable of their treatment and condition. He said to call his office and set it up.

me: ok...

So, long story short: I found a new PCP. Or rather, my mom found one for me...lol. In any case, I won't be back seeing my old one, and not going to miss her either. Now I just have the awkward conversation with them of switching and collecting my medical records...which I already did, not as bad as I'd thought it would be. And that experience made me even happier that I'd finally made the switch. I was going through my file, and its a serious mess. Really, did they shuffle it before giving it to me?? The records are totally not in order. It goes from 2007, to 09, to 02, to 04, back to 09, some 2010, some more 07, and on and on, nothing in order by date or occurrence, absolutely the biggest mess I've ever seen. No wonder she didn't know what I'm talking about half the time... Anyway, so ends my PCP dr dilemma.

Raining, ranting and more...

Alright, so I gotta warn you, I'm about to whine for just a little bit....

Do you ever find yourself trying to explain what you're feeling and how you compensate and try to avoid flares to family and friends just to have them completely disregard what you are trying to tell them...that you know your body, the reaction that you're experiencing, the progression that is inevitable and the steps you have to make to avoid complete disaster...just to have them shake their heads, give you some "helpful advice" and think they've solved your problem? I know...if you've experienced any type of chronic illness, it happens to you all the time. In fact, it may be so common to you that you just nod, maybe say a less than sincere thank you and move on to something else. I've had that conversation at least four times in the last month or so and have gotten increasingly annoyed at every conversation. It's not that I don't appreciate the fact that they care and want to help--I do! But seriously? I've been living with this for NINE years....I know what I'm feeling, I know what it means, and I know what works. And the advise given is usually something any normal sane person would find a reasonable suggestion, but again...I know what works, and believe me...if simple and reasonable worked, I would so be there. However...it does not. Let me explain...or complain...you can decide later. :)

As I've mentioned a couple of times on here, my sister and our friend Elizabeth (my one and only follower! Thanks E!) have been trying to be proactive about getting our exercise lately and have been going down to the peninsula to walk almost every day...if it's not raining (or Wednesday) we try to make it. It's also been raining off and on for the last two months...which has been KILLING me... seriously... its ridiculous... and it needs to end already...but anyway, back to my story... We're walking one day and we get to talking-somehow, I'm not sure how- about my standard Saturday morning routine. I'm a late night person, have been for years, and try as I may, I can not fall asleep before midnight. Can Not. I've tried...believe me, I've tried, I end up laying there for hours just waiting as the time slowly passes and I give up and move on to something else. Unless I'm practically out of my mind in a flare, sleep before midnight does not happen.

I've read many blogs about fellow RA and Lupus sufferers having to take naps during the day, go part time or stop working in order to compensate for the extra stress and fatigue chronic illness brings along as our constant companion. However, as a young professional, with a mountain of school loans, I don't have the luxury of sleeping in on a weekday, or taking daily naps, or even cutting my hours--also, as a single person, I need the full time status to keep and have medical coverage--and we all know how crucial that is... So to compensate for all of that, and because at the end of the busy week I'm usually exhausted, I use Saturday morning to sleep in and "recharge". I make up all the sleep I needed throughout the week and push back the clock on that countdown to flareups that inevitably comes if I overdo it. It may not be normal, but then nothing about my health has been normal in the last nine years. It works for me.

And so I'm trying to explain why I sleep in and why it works, and I get the standard answer--I get it from my mother and sister all the time, and no matter how many times I try to explain it, it still seems to be their miracle answer. "You just need to go to bed earlier..." I know...WHY didn't I ever think of that?? Seriously... And so I explain, again...why that doesn't work. But for some reason, they don't seem to get it. And I don't understand why. It's my body and while they've recently change my diagnosis, I've still been living with the same thing for the last nine years. I know what it feels like when I'm overdoing it, or about to. I know when I'm about to go to far or I need to slow down. I know when I need to take the time to sleep in, to avoid getting sick or completely mess up the way I've been feeling. I know. It may not make sense to anyone else, but it does to me. Because I live with it everyday. And I think that should count for something....don't you?

I'm just sick of having the same conversation, having to defend the fact that I don't usually get up before 10 on a Saturday morning...sometimes later if its really been a bad week, and getting the same old advice about what I'm doing wrong. Again, I know they're trying to help, and I know they want to understand and help me out, and they are some of the most supportive people I have in my life, but sometimes it just gets way too annoying.... And this concludes my ranting of the day... :)