Migraine Awareness Month #2: “Tea for Two”
I had my disability hearing last year. I’d been looking forward to it for more than a year before that.
The hearing didn’t go as I’d planned.
But losing my migraine disability case wasn’t the worst side effect of the hearing. Even losing the financial assistance my husband and I needed wasn’t the worst. And of course, the time spent and resources used (gasoline, eating out while being away from home, etc) really sucked, but still didn’t qualify as - “the worst”.
The worst was the reaction, ridicule, and cruel coldness written in the judge’s response and ruling in my case. The root cause: Migraine stigma & misunderstanding.
Now I know that stigma wasn’t the main cause for the judge’s ruling. No, the stigma was “only” the guiding factor in both his as well as my attorney’s mindset during the process. Mistakes – four of them – were made by my attorney and staff, and I believe those mistakes were made because my case (that I’d waited over a year to qualify for), one of migraine disability, wasn’t really taken seriously.
Records of my co morbid condition, asthma, weren’t followed up on and contained no doctor’s report: this led the judge to quote in his remarks, “She says her lungs feel, ‘warm & fuzzy’”. (This was actually one of the “nicer” of the judge’s words…) Also, two of my past neurologists made light of my headaches, one of them making outright jokes and statements about my, “…attempting to seek secondary gain because I didn’t want to work.” The other neurologist, one I “thought” I thought highly of (??), stated that, “I don’t think she’s really that sick.”
In the final nail, so-to-speak, was an omission of a medical condition I thought might have bearing on my treatment. This condition is a heart defect placement issue – “Congenital Left Lateral Placement” – that I felt was important to include. Although my heart is normal, where it is, isn’t. I also have a lot of palpitations and heart-related symptoms before and during my migraines – and no one’s ever been able to tell me why, so I assumed that listing this as an important detail couldn’t hurt. Boy was I wrong about that one…
My cardiologist at the time decided to “leave out” any mention of this issue that I’ve been tested for (Echos, EKG’s, etc), documented to have, and gotten checkups for (at HIS office) through the years. In addition, I made an appointment two months before my disability hearing just to make sure that the documentation was correct – all in vain, since my trusty cardio completely left out any and all mention of “said heart defect”. Of course, the judge sprinted off with this, too, and I was made to look like an even sillier version of “Hypochondriac-Migraine-Hysterical-Alice-in-Wonderland Woman”. The judge’s comment for this one, “She says her heart’s ‘on the wrong side’”. Yes, he really did put, ‘On the wrong side’ in italics (he did that for the “asthma-thing”, too…). I felt like a laughing stock, hurt, mad and more depressed than I’d been in a while – I COULD NOT stop mulling the whole thing over and over again in my head. To say I was tortured would be to trivialize the day, the event, and what felt like my whole life and definition of myself.
To say that this event set me back “a little bit” is like saying migraine feels like a paper cut. This also was not my first foray into the world of stigma, being made fun of (either behind my backside or to my front part, thank you), or of being dropped – by friends, family or so-called, doctors. These miserable happenings usually leave me feeling hysterical, frantic, and frankly, hypochondriac-like. Most times I leave these situations feeling very broken, and really doubting my own illness – it’s the classic, “losing your power situation”. I end up feeling that I have more like a cliff to stand on than a rock, and a part of me wants to run after these “people” screaming, “Please, it REALLY IS A NEUROLOGICAL DISEASE… No, I’m not just hysterical and I DO want to work… I left college because of these migraines… Look, the medicine really does cost almost $30.00 per pill, and it’s not for PAIN, it works with serotonin and blood vessels… Wait, PLEASEEEEEEE…”
No, I haven’t actually done this … physically. But in my head, these thoughts are raging, begging, pleading, and I feel like the village idiot the whole time. Many times I think it’s because I’ve tried to change the minds of the wrong people. I give away my power to feel good about and believe in myself (remember, this disease is more than just a time and pain thief – it is a shape-shifter, and able to make you believe that you: really are a nut; you really are a hypochondriac; and you are looking for drugs…) because of my well-intentioned, but misguided attempts at education of “those who cannot listen” (sounds like a movie…). As you can imagine, I had to take a break away from this “reality” for awhile. I needed to get my “groove back”, as they say and build back my belief in myself. Believing in myself again would restore at least a small part of the happiness and normalcy that the judge, disbelievers and doctors almost completely… deleted.
I took a hiatus, as they say, but my resolve and determination only came back stronger, I’m here to report.
I will say, though, that I’m a lot more careful with whom I declare my migraine-truths with now…
Now back to… TEA FOR TWO:
(Bet you thought that I would never get to the meat of today’s post – I just had to do a little ranting; I’m ok now.)
I’m not sure that I would know who to invite or talk to. Remember, this is scary territory for me (making the Migraine Community all the more attractive to me now…), and although I’ve lost some of my fear and dread about talking to just anyone, I’m still not solid on these new feet, yet.
Please don’t worry – I do get the word out, and maybe now more than ever before I speak with more conviction, more realism and more strength than I ever did before. It has helped me tremendously to “join” the rest of US, and I feel like I have migraine-backing now whenever I quote a stat or talk about a trigger. I just don’t know if I’m ready to start convincing yet… Tea is nice and cookies are even better, but will these simple foodstuffs invoke the courage I need to start talking?
Wait, maybe I’ll just invite the whole world right now. I CAN do this…
I hope you’re reading this WORLD, because, “this post is for you”. We’ll be having tea and home baked cookies during this meeting and I want you to sit down, make yourself comfortable, and just let me do the talking. I want to tell you about migraine disease – its biology, causes, triggers and most importantly, its effects on those unlucky enough to be “blessed” with it. No, it’s not just a headache… Here, have another cookie…
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com