Self-Advocacy

So much of what I write about on this blog is about advocacy, whether that is the specific label I use or not. When I did a search for the key word “advocacy” on this site when writing this post, there were pages of posts that came up, so clearly it is a topic that is top of mind for me. Sometimes I think advocacy is just so instinctive that I’m not always consciously aware of when I put that hat on; when something is wrong or needs to be fixed or just irritates me, I am more likely to say something that not.

For example, here’s what happened with my disability insurance company recently …

I am on private disability as well as SSDI and it was a pretty big lift when I had to apply for both. There were some other issues with other kinds of insurance I had to cover the costs of my law firm as I was transitioning my clients and employees, along with accessing the disability waivers of my life insurance policies, but having to “prove” that I had Stage IV Metastatic Breast Cancer (MBC) in the middle of adjusting to that reality was trauma in and of itself. And I told them so rather stridently and with some tears.

And then, I started getting these requests for updates from me and my doctor. At first, it happened every six months. If anyone has had to get their doctor to sign off on insurance forms, you know how hard that is and every six months is a lot. So, I told them how ridiculous it was for me to have to do the paperwork at all and so often, plus the thought that my incurable diagnosis was going to change was just wishful thinking on their part.

Well, they listened to that complaint and extended the time to provide that information to once a year. Since that wasn’t an option offered at the beginning, I took that extended time and thought that was pretty good, even mentally patted myself on the back for speaking up. And I know my doctor was happy not to have to help with those forms so frequently.

But wait, there’s more.

As some of you know, I talk about how filling out surveys is a part of advocacy, that just reflecting back your experience with an institution can be powerful and valuable, especially since so many don’t and many decisions are made based on those surveys. So when I got a survey recently about my experiences with the insurance company, I filled it out frankly, telling them that me having to update them regularly on whether or not I still have an incurable illness is an inappropriate way to penalize me for having said incurable illness. Sure, if they need to know about all my side effects and other issues, I’m happy to explain, but my doctor doesn’t need to certify the diagnosis again and again after five (5) years. The diagnosis isn’t a typo or a mistake and its not going away.

A mere three business days later, I got a call and was told that the requirement to have my doctor fill out information certifying my disease and the recent treatment (we had to attach three extra pages each time because the lines are small and not large enough to accommodate what happens in MBC-land) has been WAIVED. They reserve the right to call me once a year to ensure that they know what’s going on, but no more pesky paperwork proving I have MBC.

When they asked if there was anything else I’d like to share, I told them that they should have a list of diagnoses where there isn’t a necessity to keep following up and offer that to the patients. We patients shouldn’t have to be the ones doing all the paperwork and having to prove that we deserve to live. The person I spoke with said that she would pass that information along. I’ve no confidence that my saying this will change anything, but I also never thought they’d waive the requirement for my doctor to fill out paperwork so often.

You never know who is listening!!