“I’ll Take “Lupus” for $1000, Alex!”


We’ve all been there. Maybe you encountered a former co-worker or were spotted by a fellow PTO member at the grocery store. You exchange pleasantries and they ask that inevitable question: “How have YOU been? I haven’t seen you in a while. How are things going?” Now, you are faced with THE question: Do I answer the question with the undeniably expected “Oh, fine” and enable “said” individual to go about his/her day…. OR….. do I actually allude to the truth? Do I lower the veil, pull back the curtains and reveal what is REALLY going on.. even if just a little? Or do I maintain that stoic facade, determined to avoid the blank stare that comes after your admission that you have Fibro. “Oh, that’s that thing from the Lyrica commercial!”  “So, it’s like you feel sore sometimes or something, right?” Or you get that continuous series of nods that lets you know that they have NO… and I mean ABSO-FREAKING-LUTELY NO idea what your experience is, how harrowing the pain is that you endure, what crippling effect constant, unrelenting fatigue has on a person’s life when it just won’t give up and can’t be scheduled or even combated. To date, my favorite response is, “So, do you have to take medicine for that … or something?” Now, granted, I give the person credit for asking… but the inquiry really wasn’t one of curiosity, to discover what my reality is, but was dismissive, as if to say “Oh, well…It’ll be okay.” And I don’t want to sound like one of those bitter, “you-can’t-win-no-matter-what-you-say-or-ask” individuals but here’s MY truth: I’ve given birth without drugs of any sort and I’d trade my morning Fibro pain for that any day because, at least, there’s an end in sight, as regards labor pains, and a beautiful reward at the end. No matter what medicine I take for my Fibro pain, it doesn’t remove it completely. I am grateful to just have it silenced enough so that I’m not rocking back and forth or considering really unhealthy alternatives like chasing an entire bottle of Ibuprofen liquigels with a bottle of infant tylenol and “seeing what happens.” Fibromyalgia is complex and its symptoms vary from one fighter to another. But FAR too often, when I DO “take the leap” and tell someone that I’ve been having a difficult time because of a Fibromyalgia flare, the statement is met with an “Oh, please… Who doesn’t have aches and pains?” type response. However, I’ve found that mentioning other illnesses, with similar symptoms and struggles, elicits far more compassion and understanding.

So, here’s my admission: When I DO take the risk and mention some aspect of what I go through to someone who isn’t a dear, close, personal friend, I tell them that I have Lupus.. .and then mention Fibromyalgia, secondarily. Why? Why would I do that? Why would I pass up on the opportunity to inform the person and educate them regarding how extensive Fibromyalgia can be and how far-reaching its wicked tendrils? Because of the guilt – the guilt that I feel for not being enough, the guilt that is compounded by the vacant stares and assumptions that I’m just a complainer who needs to suck it up and do what I need to do and stop making excuses. It’s because of the look that I get when someone without any clue that I cry because of the pain that I suffer from, that I pace the floor at night when I can’t sleep, unable to use the time wisely by ironing because standing in place hurts so badly that I never make it past a few pieces without needing to sit down, the shame that I feel for not being 100% even though my effort each day is nothing less. I give in to it… and I want, for just one moment, to be viewed compassionately and not judgmentally. So, there’s my dirty little secret. I’m not proud of it. But, maybe, by sharing this, I’ll help someone else, who can’t bare the stares, feel a little less alone.

Advertisements

4 comments

  1. I am so glad you wrote this very well explained emotionally charged piece. I have been put here so many times and I feel my eyes shift to the ground when I do speak of Fibro. Why I feel shamed I am unsure. I feel talking to a person face to face makes me very shy. I can put my feelings into words on here but, not in my public life. I will work on this in myself. That is one reason I joined our group. You have given my courage! For that I THANK YOU!!!

    1. Thank you so much for your words of praise and encouragement. It sounds as though we are cut from the same cloth. It is rare that I give voice to what my reality is actually like. And on those occasions, I detest that feeling of regret that I get when I mention that the cause of my challenges is Fibromyalgia. Truth be told, many people feel like it’s not really a “condition” but more of an inconvenience, fueled by minor aches and pains. I DARE anyone to endure the pain that I have and not give serious thought to what a relief the end of daily pain and fatigue would be. The first time that someone asked me about my “illness” and I responded with “I have Lupus,” the response that I received was drastically different – compassionate, warm and sympathetic, inundated with concern. I couldn’t believe it. So, the next time that someone inquired, I replied in the same manner. Same response! So, that’s my guilty little secret. And it really is not a lie because, according to my General Practitioner, I DO have Lupus. However, my symptoms have not responded to any of the treatment options normally prescribed for Lupus sufferers. The way that I see it, I deal with enough guilt and stress. I don’t need to sign up for anymore, esp. not caused by apathetic strangers. Thanks so much for hearing me and validating my experience!

  2. Another thing that adds to the lukewarm response is that most people have never even heard of fibromyalgia and the people they know that have it probably do like we do and do their best to push through regardless. and as for going to work without makeup to “look as bad as we feel” forget that. Tried it at my work one day. My coworker took one look at me, said “are you alright?” I said, no I feel like crap. She said, “oh” and then went on her way! Sigh!

  3. When I read this I almost cried. It was almost as if you were reading my mind. Not that I would wish anyone to experience this feeling, but on the same hand it’s comforting to know that I am not the only one who struggles with this. I also suffer with both Lupus & Fibromyalgia. However, unfortunately my experiences with people’s reactions have been the same whether I mention Fibro, Lupus or even both. Anymore I just figure why put myself through it since it makes me feel more guilty & bad about myself, so I reply with the expected ” I’m fine”. The sad thing is, afterwards I beat myself up about it because I feel I shouldn’t have to cover up the truth about how I really feel!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s