The FDA hearings were this week, and fellow advocate Teri was there to represent all 37 million of us with Migraine disease, as well as those with other headache disorders. I kept the home fires burning and spent the time networking, asking for patients to be proactive and comment to the FDA in an effort to get them to recognize Migraine and headache disorders.
Unfortunately, not many patients seemed to see the importance of their voices, and were reluctant to comment to the FDA, despite the agency's solicitation for just such patient action.
I became frustrated and disappointed. I voiced that frustration in a couple online platforms. Unfortunately, some patients did not understand my purpose in airing these frustrations, so I decided to talk a little about it here...
Patients wrote to me that their lives were busy and they didn't have time to comment. Their reasoning was that they have to triage their whole lives and that commenting wasn't as important as playing catch-up. They felt that by saying I was disappointed, I was making patients feel even worse because we spend the majority of our lives disappointing everyone around us and adding to that wasn't a very positive thing. They felt I was scolding them by stating my disappointment.
Here is my response:
I do understand triage, very well. As a first responder and a CERT instructor, I have even taught how to do it appropriately.
Here is triage in a nutshell: The most important, life threatening things come first, so long as there is something we can do about them (no lost causes). Those who can do for themselves are left for later, and those things hopeless or near hopeless... last.
I do understand our need to triage, as I find myself in that situation every day, as I am sure most patients do as well. It really is a way of life for us, isn't it? My disappointment was truly not meant to sound scolding in any way. I am nobody's mom here. We all deal with disappointment and because we are sick we let people down. It was disappointment in the placement of this VITAL action in the life-triage of 99% of patients who were making choices that I was voicing. It was an effort to get patients to stop and look at what they are doing. HOW they triage. We had all tried the much preferred "positive" approach, all over the web, and it is failing. Even in a special positive and proactive group, it was failing. Let me explain why...
My disappointment was genuine and tearful, and had to do with the fact that in a group designed specifically for positivity and acting proactively, at the time there was less than a handful who had even replied to the request for action, let alone actually had done anything. Teri went to DC using her own funds and time - while Migraining I might add. We're a team and I covered what I could as well as spent 12 hr days talking to people trying to get them to do what is so vitally important for all of us - getting the FDA to pay attention to these disorders so we can get some medicine or treatments that will be helpful... finally. Even just removing the runaround for those treatments that are already waiting for approval would be amazing! There is a short time limit on this and its importance truly cannot be overstated. Not possible. When I said vital, this is exactly what I meant. It is life-saving.
I honestly think that the majority of patients highly underestimate their power where this is concerned. That was my point. This could be life saving for some and life changing for so many - myself included with those reading the post. To me, this is of the utmost importance. Little is more important than helping patients who are desperate. Period. There is little that takes precedence in my life for this one short week than getting everyone I know to place a comment. We had premature sick triplets born last week, my MIL married 4 hrs away, a huge family disagreement, a trip to Des Moines for national boards, a dog diagnosed as dying, and I'm getting ready to leave for Scottsdale. I do understand the meaning and importance of playing catch-up.
This is what we as advocates have to consider... what do I tell the next person I talk to who has a handful of pills in their hand, or a razor blade or gun? That there is no help for them because nobody would write a 2000 or less character note to the FDA last week?
That is the kind of pressure we are under as advocates, each and every day. Lives literally hang in the balance. Patients see their playing catch-up as important, and I'm not saying it isn't. I'm saying these lives are more important, IMHO.
Can you imagine Teri's pressure, knowing that she was the only one there to speak for 37 million suffering people? She was scared to death, afraid that if this didn't go thru, it would be her fault!
When the next Migraineur commits suicide or dies, this is what we will be thinking. That we didn't do enough. That it could have been prevented. That we could have done better.
You can't imagine the frustration we feel as advocates. We literally do everything in our power to help the masses despite our own health issues etc, yet the masses often do nothing but vent and complain and won't take 5 minutes out of their day to do something that could actually BE impactful. I'm not saying that is everyone because that simply isn't true. Raw statics say the majority turn their heads however. Isn't that sad?
It makes me weep.
Between you, me and the fencepost, we are on the computer talking with patients all day long, 7 days a week, sometimes into the early morning hours when they need help. We do it because we love patients and can't stand to see them suffer. We know that they will get the info from us they want or need, then disappear most of the time. This is actually good, because it means they were usually helped. We Migraine and lay in bed in agony, typing one word at a time trying to help others between running to the bathroom to vomit. We let our houses become a mess so patients aren't neglected. We miss family time and give up any semblence of a life... for patients. We don't get paid for that, or even thanked - that's not the point. We are just doing whatever we have to do to help people because we've been there. We do it because it NEEDS to be done. If we don't step forward, who will? That is the triage of necessity.
Lives trump everything else.
We feel so completely defeated when we ask those we have helped, for 5 minutes of their time for something so truly important, and they refuse. Really, that's what not doing it is - a choice - a refusal. There may be a good reason why a patient can't get to something really long for a day or two, but a single sentence is sufficient here if a patient can do no more more - it doesn't have to be a long letter. It's true, we feel very let down by those who don't have time for a sentence.
Most patients are under the delusion that someone else will write in, that their voice isn't important. The opposite is true. When we beg tens of thousands of people for action and get 50 - 100 comments, that is truly sad. It has happened before! We've been here before.
The fact of the matter is, the government and the FDA are literally laughing at us right now. Laughing. Most people don't realize that. If the patients who are hurting don't care enough to write, why should those in charge pay any attention to us at all? So, they don't. The squeaky wheel gets the grease. And we go to DC, walk until our feet blister, and beg and plead each year for action, and each year we are turned down. Not because our arguments aren't good enough - because they all agree that what we say needs to be heard - but because the patients won't do anything themselves. It's all about numbers. And we have none.
I need to know that there is a future for my Migraines to be treated. This keeps me going. Without that, I would be dead. Plain and simple. When no one writes, it feels personal. It means no one cares enough to make it a priority in their triage. That cleaning their toilet, unpacking a suitcase or sweeping their floor is more important. When no one writes, I know that there is no hope. WE NEED that hope.
So, my post was not intended to be negative. Actually, the opposite was its intent.
It was intended to get people out of bed and to their computer for something that collectively could change our world. It was intended to help them realize the importance of being proactive and taking action. I hope that the only thing members got from my post was not just thinking they were being scolded. I hope they got that this is important. Vital. Worth your 5 minutes. I hope that it made them feel powerful. Needed. Important. Because that is where the truth lies. Leave sweeping your floor until tomorrow so the comment can go in today.
Without you, and others like you, I might as well give up. We can't let that happen. We have to keep the ball rolling. All of us. Collectively. The dirty floor will still be there tomorrow.
So I realize now this could sound like a scolding again. Please don't take it that way. This is my way to help patients understand the scope of the issue, the best way I know how. To understand where I was coming from in writing what I wrote. To understand what drove the post - making members feel that they are important enough, powerful enough to matter where commenting is concerned.
I'm doing my best. I really, truly am.
I encourage patients and friends to let me know if you think I overstep the line at any time. That is important - you are important! I am far from a perfect person. I will make mistakes just like everyone else. In this case, the post wasn't necessarily intended to be a feel good post as one might think of as positive, but a proactive post, and positive in a different light.
As always, I welcome any feedback patients might have. :) It's good to get a conversation like this going sometimes...
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