Monday, March 5, 2012

Generic Symptom Lists

I'm unsure as to how often I'll be writing this week, as it's Midterm week and I'm going to be putting forth all of my energy toward not stressing out too much so that a bad flare doesn't follow. Feeling a bit incoherent today, but here's a little something :)

I don't know if I'm alone in this, or perhaps due to my age and inexperience I simply previously had a very naive  perspective in this regard, but I just don't care for generic lists explaining medical conditions.

When I was first told my diagnoses was "probable fibromyalgia," I, of course, went home and looked it up straight away. What I found was that many internet sources listed the following symptoms: widespread pain, fatigue, sleeping difficulties, and anxiety and/or depression. Some sites would specify in more detail what sort of pain, such as stiffness, joint pain, muscle pain, ect... Other sites would include additional symptoms such as headaches, irritable bowel syndrome, and concentration difficulty.

I remember thinking "Hm. Well, good, this seems manageable." At this point, I was still thinking medications would have me up and out of bed and feeling great again in no time! How wrong I was.

To reiterate, it was probably naive of me in failing to fully grasp the severity of the symptoms, but on paper, it just seemed so much easier and simpler than it actually turned out to be. Truth be told, I really did not think much of the diagnoses. At least not until things became worse, not better, even with medication.

Another grievance I have is how many symptoms are left out of those lists, such as dizziness, disequilibrium, muscle spams, twitches, jerks, tremors, and all of the various sensitivities. Just to name a few. Or that the symptoms of fibromyalgia have the ability to cause additional symptoms themselves.

For example, I, like many others with fibro, experience hypersensitivity to light, sound, and smell (some people also experience sensitivity to taste). This is something often not included in symptoms lists, and I thought I was going crazy when it began. Even more scarcely mentioned are the symptoms sensory overload may cause as a result. One such possible symptoms is syncope, or fainting, a symptom which I have grown to become quite familiar with.

Now, don't get me wrong - I know those generic symptoms are meant to be general and used as a brief overview of what certain medical conditions are like, or entail. I also understand that if you have a certain illness, it's your personal responsibility to educate yourself and do further research.

But let's be realistic here: if someone tells you they have a disease you don't know much about, you're probably going to go onto one of these sites and glance at this generic list, and unless something like paralysis or death is listed, you're likely not going to think much of it. My qualm is that when people do this upon learning I have fibromyalgia, while they think they now possess a greater understanding about what I'm going through, I know that they still have no idea.

What I've learned is that you don't really "get" the sufferings and daily obstacles an illness entails until you take the time to read or listen to those who suffer from it themselves. Sufferers tend to tell quite a different story than generic lists do.

Upon making this revelation, I found myself hanging out in forums of all sorts of illnesses I thought I previously understood. It was quite an eye opening and humbling experience, and I suggest you do the same, especially in the event that you meet someone with any sort of illness.

In depth, count-by-count explanations about "A Day in the Life" of someone with (insert illness here) is often such an enlightening experience, whether you can relate to it or not (which probably explains the success and popularity of The Spoon Theory). Even articles attempting to explain the effects of these symptoms can't begin to suffice compared to a raw explanation from a sufferer.

In the end, "widespread pain" doesn't begin to cover the nights where pain prevents me from falling asleep for hours, or how it wakes me up crying, or how the shower can sometimes be one of the most painful and stressful experiences of my day. It doesn't explain how it can keep you bedridden for days, leaving you to feel like an empty shell of the human being you once were.

"Sensitivity to Sound" doesn't begin to describe the inconvenience, frustration, physical discomforts, embarrassment, and even danger of the time I fainted at a conference in the middle of a speech by my favorite speaker.

"Concentration Difficulty" can't truly describe the anxiety and anger of a weakened word recall when my professor calls on my during class, or the embarrassment of constantly forgetting entire conversations, or a diminished comprehension leaving me unable to even read or write a sentence at times.

I could go on, but I think you get the point. If you truly care to understand how a person suffers due to illness - if you truly want to understand what it's like to spend a day in their shoes - then just listen to them. Don't undermine their agony and distress by visiting sites listing symptoms written by authors who've never experienced the symptoms themselves, and then go on assuming you know all there is to know about their day-to-day struggles. These lists just don't do the plight of the sufferer justice.

Once you make an honest effort to understand someone, I believe you'll find that a multitude of opportunities to learn, grow, and connect with others will present themselves.

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