Friday, March 7, 2014

You asked for it!

So, a few days ago a curious aquaintence asked me the question that those of us with chronic invisible illnesses hate to try and answer: "What does it feel like to be sick on the inside but look healthy on the outside?" This question was followed by the usual "It must be so hard! I'm so sorry!" and "Does anyone ever accuse you of just being lazy or lying?" Then a friend of the aquaintence chimed in with "Well, if I were you I'd milk it for all it's worth! Bilke the system like all the other people collecting disability...." At this point in the conversation I was so angry that I had to walk away for fear I'd do or say something that I might regret later. I don't really mind the honest questions but when someone I barley know has the nerve to interject such an ignorant and hurtful accusation toward people on disability I lose my shit!!! Now, are there people out there collecting SSD that don't really need it? Yes there are. Are there people who lie on government paperwork in order to collect benefits to which they are not entitled? Yes. However given my almost two year battle with social security, even with the laundry list of legitimate medical conditions that I suffer from, I don't think there are quite as many "fakers" out there as one might think. Of course it's a completely unfair system so I could be totally wrong on that point but just because there are a few undeserving people collecting benefits out there doesn't make everyone on disability a liar or a fraud! That said, the liars and frauds are making it very difficult for those of us that truly need our benefits! We are made to fill out endless streams of paperwork, hire advocates and attorneys, get letters from our doctors and,in my case, present ourselves to a judge just to be believed at all. So, yes I've been accused of "faking it" and let me tell you something IT SUCKS!!! Now that I've sufficiently vented over that part of the conversation I want to focus on the legitimate question. So without further ado and with no holds barred here is the answer to "What is it like.......?"

Let me begin by stating the obvious.....being sick BLOWS! There's just no other way to say it. Worse still is when you feel like death on the inside but no one can see it! That's where all the questions come from isn't it? That's when the accusations start flying because no one can see the agony. There aren't any cuts or bruises to make the pain visible to the naked eye. It's not like we wear the obvious signs that say "Caution Sick Person Inside"....although I have considered getting a tattoo that says just that....

I've been trying to come up with a way to explain it so people can at least get an idea of what it feels like and here's what I've come up with so far: You know how you feel when you're coming down with the flu? Not allergies, not a cold...the flu. That unrelenting ache in every muscle in your body, the feeling that all your bones are breaking all at once, the obnoxious fluctuating fever that drains every drop of your energy, the headache that makes your eyes feel like they are going to pop out of your skull, the horrific fatigue that makes even getting up to go to the bathroom virtually impossible? Now, imagine those symptoms then multiply and magnify them. Then imagine them persisting beyond their usual 3-5 days, try to imagine that you have these symptoms 24 hours a day, 7 days a week for weeks or even months at a time. That is how I feel! I have had those "flu" symptoms 24/7 for the better part of the last two years! They come in waves or as my Dr calls it "flares". One of my flares last year went on for almost exactly 3 months. The aches and fatigue NEVER go away but the fevers, headaches and "breaking bones" only seem to happen when I'm in a full blown flare. Do you have a better grasp on how it feels now? Let's go a step further. Take all the "flu symptoms" I described and add blurred vision, irritable bowel syndrome, restless leg syndrome (it feels like bugs crawling up and down your legs UNDER the skin..), migraine headaches, muscle spasms, limb weakness, difficulty swallowing, dry mouth/eyes/nose and photosensitivity/sun rash. Sound like fun yet? Nope, not done! Now add Dysthymic Disorder, Generalized Anxiety Disorder, Panic Disorder W/ Agoraphobia and Major Depressive Disorder!! This is what it feels like on the inside yet I look completely normal on the outside. It's sad, scary and frustrating to say the least! To literally feel like your dying a slow agonizing death but no one can see it and no one believes you....

I am sorry to be so depressing but if you don't want to know then don't ask because I am done sugar coating things! I am done trying to make everyone else feel better! I am sick, I hurt and I just want people to feel free to ask as many questions as you want but please remember to not judge and most importantly remember....You asked for it!!!

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