Wednesday, April 11, 2012

The Curse of Invisible Illnesses.

I haven't been on here lately because I'm currently working on my senior thesis paper. Luckily, I'm obsessed with my topic, and I've pretty much blown through nearly 8 books on it in the past 3 weeks, thus, my recent neglect of the blogosphere.

So an issue has been arising more and more lately. My friends want to hang out. They want to go do things we used to do. They know about my fibromyalgia, but I don't believe they fully understand it at all. Most of them are so young that they haven't ever been exposed to illnesses, unless it was a grandparent. But I'm young and my illness is invisible, so I think my situation totally goes over their heads.

My friend Ali wants me to go see one of our favorite local bands. But I can't do that anymore. It's not just that I can't dance because of pain, or that I'm too exhausted to even enjoy myself, but I have visual and hearing sensitivities. The lights and sounds and just the "busyness" of being in a crowd would send me into sensory overload faster than Uncle Earl's heart at a Shakira concert.

The crazy lights I once loved during their shows would hurt my eyes and give me a headache. Being in a crowd of familiar faces and dancing around would only bring me a lot of pain when bumping into people, that is, if my joints can even handle standing for more than 10 minutes at a time. Likewise, the heat of being in the crowd would have me drenched in sweat within minutes, causing me to feel weak.The music that I love would be way too loud, causing nausea and possibly muscle spams. And all of this would eventually lead to tremors or muscle jerking, and I would eventually faint.

And Josh, he wants to go on a walk and have deep, philosophical discussions like we always have. But I can't follow, let alone participate, in those types of discussions with him anymore. If I'm lucky enough to actually be able to formulate profound thoughts, I can't articulate them. Josh and I built our friendship on challenging each other intellectually, and though I have philosophical conversations with many people, none are nearly as deep as those I traditionally have with Josh.

But I can't take 3 hour long walks anymore. I hurt, I'm weak, I'm tired, I'm out of breath. And I feel as though my IQ has dropped significantly since fibromyalgia. I have a strong sense of what I want to say or what I believe or am trying to explain, but I simply can't articulate it anymore. And I definitely can't understand what Josh spouts out.

Everyone wants to hang out. They want to go out and party. I tell them that I'm too exhausted or feeling too sick to do things. They don't quite grasp the fact that this isn't some regular flu. In two weeks, I will still feel sick. In two months, two years... it won't matter. Fibro is here to stay.

The usual scenario is that someone will ask me to hang out. I'll tell them I'm not up to it, and they're usually really understanding and they back off... for about two weeks. And then they ask again. And the cycle repeats.

I used to drink and go out dancing all night. I used to play video games. I used to be a bartender and would bartend at my friends' parties and get togethers for free. I used to run and lift weights. I used to take day long shopping trips, whether I actually bought something or not. I used to play guitar and jam with my guy friends.

But I simply can't handle these things anymore. My guy friends try to accommodate a lot and suggest the laid back alternative of video game night. But even that I have to turn down, since it causes sensory overload. All I'm really able to do these days without pushing myself too hard is go to the movies or watch movies at home. My very best friend has been the most accommodating, but I fear even she is growing bored of movies.

There are just so many physical obstacles, it's ridiculous. I feel crazy. I feel as though I'm making excuses. I feel incredibly guilty that my friendships are becoming difficult to maintain and I'm simply falling back on years and years of friendship to keep them going right now.

My friends at school are particularly bewildered by my condition. They'll say they see me walking to class or they saw me in class and that I looked fine. And sure, I can handle walking to my classes with a tiny limp and I pull off appearing normal. I walk 5 minutes to my class, where I simply sit for an hour or so once I arrive. Then I walk two minutes over to my next class, and sit for another hour or so. Finally, I take a less than 10 minute walk back to my apartment.

I look fine walking to class. And I look fine sitting in class. And this is what they see.

What they don't see, is that it takes me 3 hours to get ready in the morning. I try my best to look "normal" because I don't want my illness to become my identifier, not in my last semester of school. When I get ready in the mornings, it's a huge struggle to get out of the bed, to shower, to blow dry my hair, to put on my clothes and a dreaded freaking bra! They don't see all of the "time outs" I have to take during that process because of pain, or weakness, or exhaustion, or simply to catch my breath.

They don't see my many morning pills that I take, or the bi-weekly injections I give myself. They don't see the shower chair, or the painful morning stretching to help ease the stiffness.

They don't see what happens after class, either. Sure, they see me on campus and I look fine. But I'm only walking 5 minutes at a time, and I'm only sitting during class. They don't see what happens when I return to my apartment. The walking I did to class will likely be the only walking I'll do that day. I'll come home and take more pills. I'll pile on heating pads, turn on a TENS unit. I'll avoid eating because I'm so nauseous and by the time I eat, it's a very real possibility that I'll just throw it back up.

I experience a regular flare up of symptoms at night. It's usually when I'm at my worst. My sinus' will start acting up, I may have some tremors or body jerks, none of which they see. They also can't see me wincing in pain from muscle spasms. They can't see how exhausted I am and how difficult it is to go to sleep. They can't see how much my mental clarity has decreased.

Funny enough, my roommate is also very oblivious to most of this. This is partially because she is extremely self-absorbed and also because I do a pretty good job of never vocalizing what's going on. She either doesn't notice my involuntary movements or assumes they're intentional. My pills are also in my room, out of her sight.

She does know I frequently go to my room for 5-10 minute intervals throughout the night (I assume she notices, at least). This could be because of bathroom urgencies, or because I want to be in private while a tremor passes, or because I recognized an aura for a drop attack or for fainting.

I mean, if you don't vocalize pain, exhaustion, or many of the other symptoms, it's pretty damn easy to appear normal.

Bleh. How do I explain this to my peers? I've thought about sharing the Spoon Theory, or simply writing out my symptoms and briefly explaining them and just post it on Facebook so everyone will know, and hopefully understand better. Unfortunately, I hate drawing attention to this and it makes me feel extremely self-conscious. I can't help but feel like I'm making excuses, and it certainly feels as though it would come off that way.

It's not that I sit at home depressed all the time. I'm not depressed at all, and I'm fine with spending all of my time reading in the quiet company of my roommate. I occasionally go out, but it depends on how I feel and it depends on the activity. Some things I simply cannot do anymore, as much as I want to and as much as I've tried, it's just out of the question at this time.

I'm having a bit of trouble staying focused and organized right now. I guess my point is, unless I vocalize what's going on, people around me assume I'm fine. It's the curse of the invisible illness. I love it in that I can conceal my illness from strangers and have control over who knows and who does not, but I hate it when it comes to my friends. They can't comprehend what goes on within my body, and I don't know how to make a bunch of 18-22 year olds understand something like this. Especially since I used to be so active before.

I also never keep up with Facebook anymore. I was always terrible with keeping up with internet shenanigans, but now... well, it's like anyone with a bad flu. Generally, you go on a hiatus until it subsides. But my "flu" won't subside. I simply don't want to deal with the internet or phone, largely due to the fact that I know doing so will cause me a lot of stress and guilt. I know people will and are asking me to hang out, and odds are, I'll forget that they even contacted me before I can respond, which usually leads them to believe I'm intentionally ignoring them. When I do respond, I'm just telling them the same thing I've told them time and time again and although I can see they're trying to be understanding and supportive, their disappointment is more than clear.

I just don't know what to do at this point. I know what I'm going through is real, but I can't help but feel like I'm making excuses or that that's how it's going to come off. I know this is something everyone with an invisible illness deals with, so if anyone has any advice, I'd greatly appreciate it right about now.


  1. First, I've enjoyed your writings. It is interesting to see a chronic illness experienced by someone as young as you. My heart goes out to you. I was diagnosed 6 years ago in my late forties. All of the fibro symptoms you list are on my plate also. It is very hard to explain invisible illness to anyone. I helped care for both of my elderly parents and they had no clue what a toll that took or the days when you just have to power through no matter what. And I guess that is my advice. Do what you can, when you can, and when people give you the "but you don't look sick" just smile and keep on your way. They will never truly understand unless it happens to them. Then, maybe. Take time to care for yourself!! It is so important. And yes, you will miss out on some things, but keep up the struggle. I love the line from a Jimmy Buffett song I often quote: There are good days, and bad days, and going half mad days..Just keep on as best you can. Gentle hugs and good luck.

    1. Thank you for your reply! And those lyrics are quite fitting! I don't so much mind when people I'm not close to "don't get it" - it's more so my close friends. They don't understand how I can look and act so normal when I feel as miserable as I claim. But if I acted how I felt all of the time, I wouldn't have a chance at happiness, you know? You're right, you just have to power through no matter what.

  2. I wish I had actual advice to give you, but I'm not sure it would be all that helpful.

    I also experienced what you are going through now, since my first big flare happened in my early 20s and my friends, family, and colleagues didn't understand my basic explanations. I couldn't get detailed because it would be 15 years later until my diagnosis.

    They all thought that I was somehow depressed or just didn't want to hang out anymore, do stuff, or be involved in friendships. Which, as you know, is not at all what goes on.

    Maybe the only thing I would say is yes to the Facebook posting. Perhaps outing yourself with links to really concise descriptions of what it means to have fibromyalgia would make an impact. They could read at their leisure and you wouldn't have to say a thing to each of them.

    This situation is incredibly difficult to understand if you have it, and impossible to understand if you don't. That's just the bottom line.

    I am thinking of you and pulling for you.

    This is something nobody should have to deal with.

    1. Thank you for the encouragement, I really appreciate it. I think I will start working on something to post. How can they even begin to understand if I don't try to explain it, right?

  3. I so understand. I really, really do. It bites.

  4. I am thinking of you and pulling for you, also - and your whole family, too. One of my sons has MS, the other has RP.

    (re the url in my post: my MMORPG characters do way more running and jumping than I do.)