Hope in Healthcare – Dealing with PCOS

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Healthcare used to give me low-key anxiety

I always actively avoided talking about healthcare. Anything from someone casually mentioning they had a doctor’s appointment or a well-meaning friend asking how I was feeling caused me to tense up and quickly change the subject.

Looking back, it sounds extreme, and I never realized how deep my fear, confusion, even anger surrounding anything to do with doctors or the healthcare system was only a year ago.

How did my fear and loathing of health care begin? Through a little thing called PCOS.

A doctor told me,“You don’t know your own body.”

PCOS, also known as Polycystic Ovarian Syndrome, is a hormonal disease. Every case of PCOS is different, and the symptoms can vary. I’ll spare you all the sordid details, but I will say that PCOS is painful, causes inexplicable weight gain, and is a leading cause of infertility.

Fun, right? Oh, and what makes it really fun is that, similar to other hormonal or reproductive disorders, there’s still a lot that is unknown about it, and even up to just a few years ago, some doctors weren’t convinced it was even real.

For me, PCOS reared its ugly, invasive head when I was a sophomore in college. There I was, wide-eyed, healthy other than seasonal allergies, ready to conquer the world, when I started experiencing crippling cramps, my appetite changed, and I was having massive headaches. I soldiered on for a few days of this until a professor told me to leave her class after I turned “Casper-white.”

For time’s sake, I’ll give provide a quick synopsis of a couple of my unproductive, infuriating doctor’s visits.

Doctor 1: PCOS is rare, so I don’t think you have it. I’ll run blood tests, but I’m sure it’s nothing some pain medication and muscle relaxers won’t fix.

(2 weeks later)

Blood results were inconclusive. It could be PCOS, but I’m not sure. I’ll prescribe you something, and you should be fine!

Me: But I haven’t taken a lot of medication, and I’m pretty sensitive to them. Are there other options or alternatives?

Doctor 1: Schedule another visit, and we’ll discuss it then.

After experiencing intense nausea, chills, and pain three days after starting the medication, I called to talk with my doctor. I was told she had left the practice, and I could see her replacement. I told her I’d be more comfortable with a female doctor, and she said the wait for another female doctor was a month. Since I was in a lot of pain, I agreed to meet with him.

Doctor 2: What seems to be the problem?

[I go through the whole rig-a-mi-roo again.]

Doctor 2: So why are you here today?

Me: I need to get off this medication. I’ve experienced vomiting, pain, and bleeding. I know this isn’t normal.

Doctor 2: Well, your body is just adjusting. Those are potential side effects and to see the benefit of the medication you should stay on it.

Me: I’m aware of the side effects, but this is extreme. Something isn’t right.

Doctor 2: You don’t know your body right now. You’ve never experienced your body with this medication in your system, so it should feel different.

I told him there was never left to discuss and left the room. I stopped taking the medication, and the side effects stopped immediately. Three years later, the medication was pulled off of the market and featured in the news as a dangerous drug with multiple lawsuits filed against it.

A ray of hope

I went to a couple of other doctors and went through about three different types of medication. Each doctor recommended a different brand or dosage. Some of them worked for a while, then stopped working, and none of them ever really mentioned PCOS. They talked about my symptoms, but it appeared that they refused to acknowledge a firm diagnosis.

The frequent doctor visits and medications were racking up medical bills that were starting to get difficult to pay since I was taking off work to go to appointments.

I realized I needed to start accepting the fact that this was my new reality – rotating doctors, new medications, and the expectation of feeling just really crappy during my episodes. I’ve always believed in facing things head-on, and I thought this acceptance would make me move on. Instead, it started a cycle of self-loathing as I felt I wasn’t listening to my body, and I started feeling depressed knowing that my body was going to be a source of pain and discomfort the rest of my life.

“I felt I wasn’t listening to my body, and I started feeling depressed knowing that my body was going to be a source of pain and discomfort the rest of my life.”

Then, I started a new job. This job offered the benefit of a clinic that my employee “paid for” (a small amount of money was taken out of my paycheck, and my employer matched it). Of course, I avoided it, but after an exceptionally bad episode, I knew I had to go to the doctor.

I walked into the new office trepidatiously. I knew I would have to tell her about my history, I was prepared for skepticism about my disorder, and I fully expected us to have to go through a couple different medications or dosages to get it right.

My new doctor walked into the room, peppy and at ease, which made me even more nervous. Her first question was, “Tell me about yourself. Why are you here to see me?” I rattled off what I’m sure sounded like a rehearsed monologue and prepared myself to hear the follow-up questions and cynical statements. When I heard, “Oh, yeah PCOS! That can be an awful disease if left untreated.” I stopped. What proceeded was a quick exchange of me asking her follow-up questions to make sure we were talking about the same thing, and her telling me of her helping other patients with the same disorder. We spent the rest of our 15 minutes just chatting, and she was able to pinpoint the way other doctors have given me misinformation and prescribed a new medication to try. We both ended the appointment reluctantly, agreeing that we wish we had more time.

“She simply took the time to listen, and I could tell she was coming to the conversation with an open mind, knowing that I could listen to and ready my body in ways she never could.”

I walked out of her office, and I cried. I can’t remember the last time I felt such relief, and for the first time since I was diagnosed, I had hope. And it’s not that she did anything necessarily novel. She simply took the time to listen, and I could tell she was coming to the conversation with an open mind, knowing that I could listen to and ready my body in ways she never could. The medication she prescribed for me that day worked, and after a couple of follow-up visits, my disorder was completely managed and in no way disrupting my life.

Joining the Movement

I told myself that if I could ever find a doctor I could trust, I was never letting go. And then I left the company that paid for the clinic, and I could no longer see my doctor. We kept in touch, and I would still reach out to her if I had big questions, but it wasn’t the same, and I was caught in the harsh, changing winds of healthcare yet again. I felt more equipped to deal with it, but at the end of the day, I felt like I lost a huge partner in health.

That is, until I was sitting in a meeting with a new client. I was working at a marketing firm, and a company called Freedom Healthworks walked through the door. It was a small start-up, but they stuck out immediately because they all seemed so genuine and passionate. And that was the impression I received before they officially told us what their company did. I remember physically straightening in my seat as they explained the new Direct Primary Care, or DPC model as it’s better known. Highlights of the conversation were that insurance companies weren’t working and healthcare is too expensive (my pocketbook was proof of that), that doctors were looking for a new way to practice to avoid burnout (that could explain some of the doctors I’ve encountered), and patients need more time with their doctors to build a trust that, ultimately, led to a relationship between a doctor and a patient and healthy lives for all. Since DPC doctors don’t bill insurance, and it takes out a ton of paperwork and administration, the costs go way down, which makes this model affordable, too.

I got goosebumps on my arms as they described everything that I went through, and even though the doctor who could finally help wasn’t a DPC doctor at the time, she was able to help me in the ways Freedom Healthworks had identified: more time, earned trust, and life-changing outcomes. So I left my job and went to work for them! The rest, as they say, is history.

How my view of healthcare has changed

I believe that being sick doesn’t have to be a death sentence. Healing never happens alone. People shouldn’t have to choose between going to the doctor or paying the light bill. Healthcare is NOT health insurance. Good health belongs to all people. A big part of health is knowing that you’re worth it. When people are healthy, they’re unstoppable. Health isn’t an opportunity – it’s a right. There is no such as stupid questions. True health and happiness come from believing in someone. Freedom Healthworks offers freedom, not fear. Liberation, not isolation. Hope, not despair.

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