You Must Be an Advocate for Yourself

Navigating through the medical system is exhausting work. Keep going anyway.

I spent a couple of hours today doing the footwork of following up with my medical providers. It was exhausting, and it took most of my energy out of me for the day.

First thing this morning, I went to my physical therapy (PT) appointment. My PT is excellent, and she’s an expert in lymphatic drainage. When I arrived, she had durable medical equipment (DME) reps there to help fit me for a pneumatic compression device to treat my chronic swelling.

This took an hour of measuring my body, trying on the equipment, signing paperwork, and collecting all the necessary information to get an approval through my insurance company.

After that appointment, I only had enough energy to drive home so I could climb back into bed and sleep. It was only 10:30 a.m.

By lunchtime, I was awake. The last thing I wanted to do was deal with more medical stuff, but I had to keep going because I wanted to get better. So, I sat down and got back to work.

I called to follow up with a company for a functional capacity evaluation (FCE). I’d placed a referral at the beginning of the week but hadn’t heard back. I got a live person on the other end, only to tell me she was going to have her coordinator call me back.

Then, I called an interventional radiology clinic because my vascular surgeon referred me there to assess and treat my pelvic stagnation. It has been almost two weeks since that referral was sent. The woman I spoke to explained they were waiting for an imaging CD but hadn’t yet received it. This was a case of neither providers doing anything to move me forward in my care, and I was the one who had to light a fire underneath both of them. I went round and round with her because she started giving me a Catch-22; I needed an evaluation done before I could see them, but they were the only ones who could do the evaluation that they needed.

Maddening.

I finally cleared that up after some time on the phone. After I hung up, I realized I hadn’t heard back from the FCE place.

I have never heard back from them, so I’ll have to call again tomorrow.

As a nurse, I don’t like to admit this, but nobody cares about your healthcare more than you. You must want to get better and not lose hope, no matter how many obstacles you encounter.

The medical industry and medical insurance is a convoluted, aggravating, bullshit system that we must navigate to get what we need. There’s no reason to complain about it (although complaining can blow off a little steam). It’s best to take a deep breath and know you’re doing this for yourself. And keep going. Just keep going, no matter what.

I know the medical system and the insurance industry very well. I’m even what you’d consider an expert in both of these entities. Working in both my entire career, I’m quite aware of how broken they are. Even though I know what I’m doing, I still tire of wading through the muck and advocating for myself. But I’m here, and I want you to know that you’re not alone in this struggle.

When I first realized I had this disease, I became hopeless. Lipedema isn’t well-known, and insurance doesn’t recognize certain treatments, like liposuction, and therefore denies coverage. I thought I was going to either lose my body to this disease or go into bankruptcy to get treatment.

But I have found this isn’t true. I have so much information on this disease now, and I’m telling you, there is hope. A lot of hope.

However, Lipedema is a complex condition that requires a lot of coordination and management with various types of doctors and treatments. You’ll be making a lot of phone calls.

Don’t worry if you think you’ve called your doctor too many times or worry about being a pain in the ass with your insurance. If you don’t understand something, ask them to explain it to you until you understand. Make decisions that are best for you, not best for the physician treating you. Get a second opinion if you aren’t comfortable with what’s happening in your treatment.

I’ve developed this newsletter to give you the education, hope, and encouragement you need. It’s here to light that fire under you and help you to keep going.

We are in this together and we are going to change the way society sees us and the way the medical industry takes care of us.