** A brief note that this will be the last blog post for a few weeks. The PAC team is taking a well-deserved break and will be back the week starting July 19 rested, refreshed, and ready to go! See you soon**

Alzheimer’s Disease, one of the most common of over 400 types of dementia, terrifies me. I have dementia on both sides of my family, and though the majority of types of dementia are not hereditary, my emotions can’t seem to accept that.

I am not alone. In a 2016 survey out of the UK, over half of the participants who suspected they had dementia put off going for a diagnosis. Over 60% said they thought a dementia diagnosis effectively would mean the end of their lives. I don’t blame them. I can’t let myself think knowing my mental capacity was slowly but inexorably declining while my physical self remained healthy without triggering a panic attack. When I had to designate my preferences should I be mentally, but not physically, incapacitated, I cried through the whole section. It was traumatic.

I am a planner. I check menus before going to restaurants. I investigate parking options for every new place before I go. I need to know what to expect and what to bring to accommodate my condition. I’m not pathological about it – new technology and medication affords me a measure of flexibility -- but I was medically raised in an environment where rigid routine was the healthiest path. Which I didn’t follow, of course, but the lessons were learned.

It’s a natural state of mind for chronic and autoimmune patients. There is such a high level of uncertainty to many of our conditions that planning is a way to help us wrest a little bit of control back from conditions that afford us very little.

I know how this is going to make me sound, but I have a confession to make. The gratitude movement drives me nuts. For years, we have been told that taking time to list the things we are grateful for will do wonders for our mental health. Um, what?

Make no mistake. I am grateful for a lot of things. Mostly people, actually. But that’s already part of my psyche. I express it when appropriate, but realigning my life to display an “attitude of gratitude” feels fake and insincere. For two reasons.

Something’s been bothering me, something I had forgotten.

A few weeks ago, my friend was diagnosed with Type 2 diabetes. I was sorry to hear it, but it ran in her family and she said she was on solid ground and that her family was supporting her, so I figured that she had the help she needed. I made sure she knew she could call and ask questions whenever and then I let it be.

Cycle forward about a month. I called to check on her, and it turned out that she didn’t have the help she needed. And by help, I mean information. And by information, I mean fundamentals.

In the last few years, I have met some amazing, dedicated people who work hard to make patients’ lives easier. Many of them came to their callings through terrible circumstances, either health issues that struck them personally or even more often, harrowing health issues that happened to a loved one – a parent, a child, a friend, and sometimes a combination of self and loved one(s). They talk and write and demonstrate, hoping to strike a chord with decision-makers and bring a change to an industry that makes more lives harder than it makes easier. (Survival does not count as “easier”.)

I wasn’t one of those people. Until I was.

I didn’t know I was self-advocating when I did it.

I just knew that I was right and they were wrong.

I was on a panel recently about becoming an influencer, and I remembered something that was probably my very first act of self-advocacy. This little act of defiance and protection took place when I was seven, so if there was one before that, I’m kinda glad I don’t remember.

If I was seven, it must be meningitis.

Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.

One I would love to make my profession is having a patient in the room when public policy is being made. Ideally, I would be that patient, but any one of us could contribute. Now, there are a lot of different kinds of policy, some originating in the private sector like value-based care models and patient quality and safety standards. Then there is the public policy from states’ insurance regulation to Executive Branch agency policy to legislative branch bills that end up as laws and code. Who better to help craft those policies than the ones who will benefit from good ones and suffer from bad ones?

*Steps onto soapbox.*

Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.

One that’s taking up a lot of my headspace lately is the impact of serious illness, especially chronic illness, on mental health.

*Steps onto soapbox.*

I’ve spoken before on how being in a wheelchair when I was just starting school left a lasting imprint on my psyche. But that’s just one of myriad ways that dealing with health issues can mess with your head.

Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.

The one I’ve had for a while is patient-provider communications.

*Steps onto soapbox.*

Even if we had a positively Utopian healthcare system, if patients are not empowered to share their healthcare goals and enabled in the decision-making process, we are never going to have the best care we can get. The surface of this issue has been scratched, but only just. Right now, treatment of the whole person is rare – in the grand treatment plan, we, as people, barely matter.

It seems like a lifetime ago, but the Supreme Court case challenging the constitutionality of the Affordable Care Act (ACA) is still alive and kicking, and I wanted to check in and see where it stood. By previous scheduling standards, arguments should have been scheduled for the 2019-2020 session, with a ruling in less than six months before the election, but Chief Justice John Roberts is hyper-conscious of his legacy and the perception of the court becoming more and more politicized, so the case was scheduled for a time when a ruling would not have a direct impact on the election.