How Advocacy Empowers: Mia’s Story

When Mia* first called Lost Coast Advocacy, she was having a rough day. Mia’s psychiatrist had just told her that she might have some insight as to why Mia felt her health care had suddenly become…worse. 

Before she could explain the change, we had to go back to the beginning. Mia worked in the health care industry until she got sick. When she first started visiting the emergency room as a patient, she felt her care was acceptable. Professional. It was more or less what she expected. At some point though, that changed. Sometimes, she was treated so poorly by the staff that she even decided to leave against medical advice.

When she mentioned it to her psychiatrist, the doctor mentioned that stigma toward substance abuse was an unfortunate reality. 

Huh?

Mia was seeking care for PTSD, in addition to the difficulty of living with chronic illness and ADHD. She had never used substances other than the medications she was prescribed. She had a drink once in a while, but nothing close to worrisome.

Well, when she went home and checked her patient portal records, she found that during an emergency room visit, years ago, the medical team ran a urine drug screen without discussing it with her. To be fair to them, she was having a lot of seizures at the time, so there were periods where she wouldn’t have been able to communicate well with them. 

However, when the urine drug test came back as positive for methamphetamines, they should have checked her medication list (which included Adderall and phentermine – both of which can cause a positive test result) and talked to her and/or one of her doctors about any concerns instead of listing substance abuse in her chart. Because of how it was documented, this diagnosis was being shared prominently with every other health system this emergency room was linked to, and this had been going on for years.

To make it worse, Mia also had a problem with the academic center neurologist who had been treating her seizures for 5 years. One day, he just said that she didn’t have to come back anymore, but that she should see the functional seizure expert. He didn’t explain what her diagnosis was or meant, what to do with seizure medications, what caused this condition or how to help, and, he didn’t mention the substance abuse label in her chart. He also didn’t mention that her chart said “self-diagnosed EDS” – not accurate and potentially leads to care bias from providers.

(EDS or Ehler Danlos syndrome was diagnosed by a rheumatologist based on symptoms and exam findings which is entirely appropriate. Genetic testing for Ehler Danlos only helps with certain subtypes.)

Because of all of this trouble with documentation and communication, Mia’s faith in healthcare was seriously shaken. She was medically complex (diagnoses of EDS, ADHD, seizures, chronic pain on medication, PTSD, and history of many vascular complications including surgeries) and she needed to get her records corrected over several years and across several medical systems.

When Mia called, she didn’t know what to do or if we could help. She knew that to get her records corrected, she would have to read them to find the errors, which meant that she would have to relieve some of the worst days of her life that transpired in emergency rooms and the worst doctor’s visits she’d ever had. She didn’t know if she had a chance of success on her own.

When we decided to work together, Lost Coast Advocacy was happy to get ahold of those records and read through them. We helped call medical records departments to talk about their correction policies (these are different in each hospital and clinic) and follow up on everything.

Over the next several months, we also limited the sharing between institutions (so that one ER visit wouldn’t keep putting an inaccurate diagnosis of substance abuse in front of every new doctor she met), and filed a formal complaint about the neurologist with his boss because Mia hoped it could be a teachable moment for him and the department about the impact their communication skills have on their patients. We helped Mia find a lawyer to speak to about malpractice and decide if that was an avenue she wanted to pursue. We also explored the formal complaint process in other places – with her insurance, with the medical board, etc.

We didn’t stop there. We got Mia connected to the EDS society, where she found peers and tools (like printouts to share with the EMTs so they don’t accidentally dislocate her shoulders again). We listened to her talk about symptoms and various appointments as a trusted ear who understood what she was living. We offered suggestions now and then - a different approach, coping strategy, type of provider, or organization strategy - that had helped others.  We helped set up supports for the times when her conditions worsened and she needed help doing things she could usually do on her own (like walking to the bathroom – usually fine, but if she had just had a seizure, she was too dizzy and had trouble.)

We talked about dissociative seizures and whether it really fit her or not. We talked about how to bring it up with her most trusted doctors to get their opinions without damaging a good patient-provider relationship. We sat at her kitchen table and filled out advance directive and power of attorney forms so that the right people would be able to make decisions if Mia couldn’t speak for herself. We talked about treatment options and how to weigh them.

When Mia’s rheumatologist suggested she might have dysautonomia but didn’t know more, we found out who could help do the testing and how to get it covered by insurance. When Mia was worried she could never have a normal life with her medical conditions, we learned about different approaches to disability together. (Spoiler Alert: plenty of people work, play, parent, socialize, volunteer and have rich, meaningful lives with a wide variety of impairments.)

When Mia had a billing/insurance issue a little bit beyond what Lost Coast Advocacy usually did, we connected her to another advocate who could help. When she wasn’t sure if it was worth a copay to visit a specialist, we talked about how she could call the office and speak to the nurse or medical assistant ahead of time to know what to expect. 

After Mia had been with Lost Coast Advocacy for about a year, she mentioned on one of our regular check-in calls that her doctors had noticed a change in her. The psychiatrist who first recommended that she get help with her records noticed that Mia was more confident in appointments – empowered even.

She was making her own decisions about her body and her life, with the advice of the doctors and specialists, but also with the confidence that she knew herself and her situation the best and would make the right choices. She negotiated with a surgeon concerned about complication risk – they agreed that if she would take extra antibiotics and stay in town, then she didn’t have to stay in the hospital as the surgeon first wanted. Mia even made new friends and had been able to travel overnight without worry. We cheered her on! 

Now that Mia has been “graduated” from advocacy services for a few years, we know she’s got the skills she needs to take care of herself, and that she’s always got our number if something comes up that’s too much all at once.

Mia’s story shows how hard healthcare can be, even for people WITH insider experience and insurance. It also shows how practical, compassionate support from an advocate can change the story about illness, healthcare, and empowerment. If there’s anything in her story that resonates with you, reach out and see if comprehensive advocacy could be a good fit for you. 

*not her real name