I have the grand misfortune of having 3 of the most stigmatized diseases – type 1 diabetes, celiac disease, and borderline personality disorder – and I would like the public to stop making it worse.
I never really know what to say to people when they ask what I’m doing for the holidays. I want to say – “I stopped celebrating holidays years ago when I realized they’d only bring pain.” Too many years I was hurt. This year too many are hurting.
Today I ran into my old figure skating coach. She was my first coach some 24 years ago and while it was a delight to see her, it was also incredibly awkward. The thing is, whether I’m running into an old acquaintance or meeting new people, I’m never quite sure what to say.
After writing a blog post on the need to inform others when I am having a panic attack, I did go back and make a few of my own cards. When Nikki Seefeldt over at I Live & Breath reposted the blog on her site, I was reminded that I wanted to share my solution. I’m posting the cards here so you can get an idea of what worked for me end hope that others will feel free to use them or adapt them to fit their needs.
I will note that some individuals suggested that I include more information like a website address. However, given that these are to be used in emergencies, I felt that the simpler the better and that the person helping will not have time to go to and search a website for helpful information while I’m having a panic attack. Others may find that they want more or less information for their cards. But I encourage anyone making their own cards to focus on only including the minimum necessary information to get the help you need in that moment.
You may save these images from my site or feel free to contact me via the comments below or on Twitter @GilmerHealthLaw and I can send you the files I worked on. They are designed to fit the size of a business card.
I only ask that you do not use these to make a profit for yourself or any other organization. I would like to keep these free and accessible to the community.
Three doctors have now fired me following the message I sent to all my providers. I honestly am not completely surprised though I am deeply disappointed. I think that we can do better than this in healthcare. I think patients deserve better.
However, I’m not sure that the doctors I’ve written understand how I came to the decision to write them all as I have been asked “have you considered…?” on more than one occasion. And the answer each time I’ve been asked is, yes. Yes I did consider a number of things before pressing send.
The Monday after my last post I felt incredibly supported by the epatient community (and many of the providers that make up that community too). I felt a bit of a high thinking – Yes! This is what advocacy is about! I’m not crazy! Other people feel this too! This means something!
Then the next day, my emotions took a marked turn and I started to feel bitter or just more frustrated. The patients get it. But the providers don’t.
I went to an appointment and walked out with the express feeling that I was being asked to sacrifice more of myself, my time, my energy. After, I went to the pharmacy, where because CVS bought Target Pharmacy – CVS which I expressly left because of their horrible service – my prescription was not filled and my insurance was messed up. And all I could think is that there is no more of me to give. There is nothing left of me. I have given it all to health and healthcare and been sucked into the maelstrom of tests and medicines and procedures, doctors and therapists, industry and politics. I have given everything and I have no idea who I am.