I Wish Advocacy Was Unnecessary

It would be better if we never needed to advocate.

Within my medical world, advocating is usually pretty straightforward. I usually advocate for myself by bringing up an issue to my doctor, requesting a tweak in my care plan, or asking for something a little unusual or hard to get. I generally don’t have to plead my case in desperation, but I know that is what advocacy looks like for many people.

Recently, my husband and I had to advocate for our kindergartner within the school system and it was awful. It was unfamiliar territory for us and we came up against an aggressive wall of opposition we weren’t expecting. At one point in the process, the thought hit me: none of this should be necessary.

Advocacy can be a symptom of neglect

When advocating, you – or someone helping you – are pushing for something that’s not naturally happening. You might be making a simple appeal or you could be in a difficult argument trying to get the support you need. In a lot of health scenarios, compassionate people doing their job well would remove much of the need for advocacy.

Since receiving my lupus diagnosis, I’ve had to learn how to ask for what I need when it’s not given. Sometimes I feel like there's this massive void in my care and I'm the only one who can see it. Fixing these issues through advocacy has required a lot of work and education on my part, but I’ve been fortunate to generally have things work out when I have made requests.

In the recent situation with my son, I felt like my eyes were opened to just how bizarre advocacy can be. The situation was so avoidable and yet, my husband and I were allowed to bring an advocate to help us even though we were attending as advocates for our son. We did bring an additional advocate and it turned out we needed their help. I still feel sad that this advocacy work was only required because someone did not choose kindness and empathy in the first place.

A need for health advocacy often means something went wrong

Medical advocacy can have serious implications. Someone who can advocate well for themselves might be able to receive something, like a clinical trial slot or insurance approval for an expensive drug, that could drastically change their quality of life. People’s lives have been saved through advocacy. But we don't typically need to advocate unless things aren't going well.

There are different types of medical advocacy. For example, the Lupus Foundation sends representatives before Congress every year to ask for money to be allocated to lupus research. They’ve been successful in this endeavor and it’s important because there are so many health issues that need to be addressed. Many members of government wouldn’t know about lupus and the need for funding unless we stand up and tell them. This isn’t the kind of advocacy I’m calling dissatisfactory.

The problem is when we go before our doctors, especially our rheumatologists, and they either don’t know how to treat us or they refuse to acknowledge or treat our disease appropriately. We shouldn’t have to fight and advocate for ourselves in front of a specialized medical professional. If everyone, from the phlebotomist to the insurance adjuster, did their job with pride and compassion, then health advocacy needs would decrease dramatically.

I’m tired of advocating

It won’t be long, just 2 more years, until I’ll have spent a decade in the world of chronic illness. I’m tired. Even though I have great insurance and generally great doctors – I’m so deeply tired of it.

My biggest personal advocacy moment this year happened when my insurance denied my biologic medication. They denied it because we had not submitted proof that it was working. However, they never asked for us to submit proof, which we would have happily done.

Instead, I suddenly found myself in an urgent message carousal with my doctor as we tried to figure out what was happening. I stayed up late scrambling together what I hoped was convincing enough evidence for my insurance company (their wording was deliberately vague) so my doctor could try to fix the situation before I ran out of medication. This situation could have been avoided if the insurance company had asked for verification instead of automatically issuing a denial after a certain period of time.

It was an unnerving experience. One moment I was safe with the best medication I’ve tried for my disease to date and the next the rug had been pulled out from underneath me. I was fortunate to get it back. I know several people in the chronic illness community who’ve had their medication changed without their permission who went on to suffer permanent damage from their disease and have never been able to get back to what life was like before.

We shouldn’t have to advocate for medical care on such an uneven playing field.

Do you have an advocacy story to share? Do you experience "advocacy fatigue"?