Tuesday May 8th, 2012
“You think you know – but you have no idea…”
WEGO ‘True Life Tuesday’ Blog Party Post
You think you know, but you have no idea… what life is like for those of us with migraine disease.
I often find myself ruminating more, angering more, and filling up with more tough questions about my disease – this dagger in my side – when I’m sicker. Sometimes these feelings are triggered by emotional upheaval (bad as well as good), celebrations, and life changes too.
All of these things happened last week.
My daughter graduated with her ASN just this past Saturday. As you can probably imagine, Saturday was big, celebratory, and wonderful; I was able to enjoy pride, gratitude, joy and relief that the hard work was over for her. My gratitude extended to include the gift of my being able to attend the ceremony, something no respectable migraineur would ever take for granted. It was an amazing day.
But other, not-so-fine emotions were able to rise to the surface of my consciousness, adding heavy feelings and weighing down my thoughts with burdens I thought I’d mostly dropped.
The quest for my own career came quickly back into focus as I watched my daughter and the other graduates smiling, walking, and then accepting that little piece of paper that would ensure their dream careers. I snapped photos of them turning their tassels and waving to their families; I clapped after the speakers’ inspiring words; and I soaked in every meaningful moment of the day.
I realized that this could’ve been me, too; I could have shared the joy of a career earned in a field shared with my daughter (I was working toward my Paramedic Science degree). Then I pictured myself as I am now: middle-aged; more-or-less broke; yearning for meaning; and plain and simply – sick: sick of being sick, and sick of feeling like just another loser losing in the game of living. My happiness remained, but was now joined by my ever-present and amazingly-resilient “negative side”.
As I writhed around in a little delicious self-pity, I became aware again of the rage I feel because of my disease. I feel rage because of the pain, isolation, and loss of life that the migraines have cost me. My resentment increases to include the guilt and disgust that being in pain invariably brings to those not completely in control of their own lives.
But these emotional and physical burdens can’t begin to describe the additional burden present in all migraineur’s shoes. No, this particular burden isn’t physically painful, but has been proven to escalate the level of pain and its sensation; it is misunderstanding and it raises the bar so much more than the physical pain; and it is the stigma that almost all “invisible” illnesses carry every day.
This stigma infiltrates every pore of a migraineur’s body, mind, self-esteem – core. It is probably the number one reason that those of us inflicted with this life-altering disease lose friends, family, careers, and dreams. It is hard to be discounted, disbelieved and labeled a wimp, faker or “someone who’s just trying to get out of work/being responsible/participating. I want to ask the disbelievers why ANYONE would want to be denied the chance to work or participate in life. I see myself in dreams opening up my head, showing them the glistening pain, and screaming at them that, “Look, this is REAL – how in the world can you not see it NOWWWWWW!!!!!!!!” In my more primitive moments, I delight in their brutal moments alone with this “thing”, this monster who wears my face and inhabits my every breathing moment. I pass “it” on to them; insert it into their heads; and feel only stinging vindication.
I am livid with it…
After my daughter’s graduation, we drove to her party, another celebration mired in hope and gratitude of my being able to attend. My monster, however, had a slightly different view of “party” and had slithered into my brain during its three-hour stint in the auditorium’s fluorescent lights. I vowed to ignore it – and actually pulled it off for awhile – not realizing that my earlier, more negative feelings came with the monster.
Being with family was wonderful. I basked in the simple fun, celebration, and good food that marked this happy day. I felt refreshed to get the chance to do something that allowed me to forget just how different I really am.
But once I knew for sure that the migraine monster had come to visit and wasn’t leaving, I again felt guilty, depressed, inflicted and very different.
I smiled as I strolled to my car to get my trusty triptan. I willed my grateful, positive side to “come forth” and show itself. It didn’t disappoint. No one really knew how bad I was beginning to feel, and although the activist in me wanted to tell them all about just how crappy this horrible disease REALLY IS, experience kept my mouth shut. I wanted to explain then and all the times before then, how scared I get; how worried I am that my triptans will run out; and how hard it is to remain positive and courageous while stuck in the mire and muck of a disease very few understand or care to understand. I want them to know just how bad the pain really is – that I’m not a wimp, not a “Barbie”, and definitely not using “those headaches” to get out of doing things!
I WANT to do things; I WANT to participate; I WANT to live and be accepted and believed. I WANT funding for this disease and I WANT compassion while I suffer and plan my whole life around the pain and trying to tiptoe around it. Please, someone – HELP ME; don’t leave me to suffer like this, then talk behind my back about what a fake and failure I am; please don’t roll your eyes when I talk about not being able to work or go back to school; please allow me some dignity and believe me when I say that THIS KIND OF PAIN IS DEBILITATING! Give me and all others suffering with invisible illness a chance; don’t judge if you can’t be sure. Love us anyway. Remember…
“You think you know – BUT YOU HAVE NO IDEA…”