The Value of Openness by PatientsLikeMe ®

The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden.

U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes of vomiting and severe weight loss and has been hard to diagnose. She had three abdominal surgeries and has shown her scars on Instagram.

After a long and painful recovery, Alexa was able to return to skating. “My whole outlook changed,” she told Team USA. “I was grateful to have the chance to fall instead of stressing out over falling or not. Was a fall as big of a deal as a drain getting pulled out of me? No, not at all. I was grateful.”

In PyeongChang, Alexa and her husband/skating partner, Chris Knierim, took home the bronze medal in the figure skating team competition and placed 15th in the pairs competition.

Alexa shared this photo with SELF for a video about her health problems and extraordinary road to the Olympics.

American long-track speed skater Brittany Bowe sustained a concussion when she collided with another skater in 2016. Later, after fainting multiple times, she was diagnosed with post-concussion syndrome and a lesser-known condition called “POTS” or postural orthostatic tachycardia syndrome. POTS can be a years-long or potentially lifelong condition, and it affects the body’s ability to control blood pressure or heart rate as it should when you stand up, which can cause dizziness, lightheadedness or fainting.

“There would be times where people I’d not seen in a while [would say], ‘Oh you look great, you look so healthy…’ And I’m just dying inside because I know my head isn’t on my shoulders where it normally sits,” Brittany said in a video she shared on Instagram. (Her comments reminds us of what many patients with invisible illness hear from “the normals”: “But you look so good!”). She received specialized care and coaching for people with POTS and was able to qualify for the 2018 Olympics.

Canadian snowboarder Spencer O’Brien started feeling serious joint pain and stiffness in late 2012, and she originally attributed it to normal wear and tear from her sport. It took until 2014 to get the right diagnosis (rheumatoid arthritis) — and she went through bouts of depression before finding out what was wrong.

“A big lesson I learned during that experience was to be an advocate for my health,” Spencer told The Inertia. “I think our intuition is so strong, like I knew something was wrong with me beyond the injuries, and I did voice that, but we ran a number of tests, which came back clean.” She had to push for additional tests, which pointed to RA and helped her get on the right track with her treatments so she could continue her sport.

U.S. cross-country skier Kris Freeman was diagnosed with type 1 diabetes in 2000 (at age 19) after a routine blood test run by a U.S. ski team physiologist. PyeongChang was his fourth Olympics appearance. During the 2006 Olympic Games, The New York Timesprofiled Freeman and his unique treatment/training regimen. (Little known fact: Insulin is on the anti-doping list, and athletes who need it for medical treatment, like Kris, have to apply for a waiver — “one more hurdle that comes with managing diabetes,” The Times noted.)

“The last few years have been tough with some pretty public setbacks with my diabetes,” Kris told Lilly Diabetes (he’s a speaker at their diabetes summer camps for kids). “But, I’ve been able to stay positive and maintain my nutrition and overall diabetes management, which has helped me tremendously. I want to show everyone, especially children, that they can and should keep reaching for their dreams.”

Marc Oliveras, an alpine skier from Andorra, was diagnosed with lupus (SLE) in 2014 and took a break from his sport so he could treat the autoimmune disorder, which was affecting his skin, kidneys and blood. “After a long recovery and a difficult summer, where I had to start first knowing the unknown [my disease], being able to compete is already a reward,” he said in his athlete profile.

It’s worth reading The Mighty’s article to the end, because the author reminds people living with health conditions that everyone’s illness and situation is different: some people may have milder forms of a disease, respond better to treatment, or have better access to world-class care.

Also, the media tend to share a boiled-down or glossed-over features on athletes triumphantly “overcoming” their condition, rather than showing the everyday challenges or realities of managing their condition while training for their sport. Fortunately, athletes like the ones above are raising awareness: they’ve lived, breathed and trained with their condition, and they feel grateful to even be able to compete. That kind of perspective is pure gold.

Do any of these quotes or stories strike a chord or inspire you? Join the conversation on PatientsLikeMe.

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Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that  prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she says can be like “trying to find a needle in a haystack.” Kimberly tells the story of how eight of her doctors became out-of-network overnight when her insurance changed, and how she navigated the system to replace those providers and get her care team back on track. Here’s her story…

Last fall we knew that there was a strong possibility that there was going to be a change in our employer based insurance, and that turned out to be true. A decision had been made and we received final word ten days prior to the switch. Along with the letter, there was a form that you could fill out if you had a complex case, or needed assistance setting up care. As a patient who happened to have a very complex case, as well as someone who was going to be utilizing resources galore, this form was what I needed. This piece of paper was my golden ticket. It was filled out almost as soon as the envelope was ripped open. I also attached two more pages with everything detailed, so there was nothing left for the imagination. Medications, treatment dates, specialists, and conditions all were listed, so that they had as much information as possible to start the process.

From in-network to out

We were currently with an HMO Provider in the same town, but our new HMO was not part of the same network. After frantically searching to see if ANY of my providers were going to be able to continue caring for me, I sat in shock.

“Eight of the members of my care team (doctors and physician assistants), were now going to be considered out of network.”

I was feeling a little bit like Cinderella, with a midnight curfew and had to work on setting up a new care team FAST! Luckily, I have an amazing primary care physician (PCP), who was still considered in-network, as well as my local hospital. I knew that I would need referrals to get established with new specialists and my PCP initiated the referral process for multiple specialties. Those took a backseat for the moment, as I had a more immediate need. My monthly infusion for my immunodeficiency was scheduled within a week of our plan change, and I knew that I didn’t even have an immunologist anymore, let alone orders for the infusions! Calling back on a whim one more time to ask for a transitional case manager turned out to be the piece of luck that I needed.

A disconnect in healthcare

The transitional case manager was only responsible for making sure that the first two weeks of my care were set up correctly. Prior to the end of the first two weeks of care, I called and asked to be assigned a complex case manager to move forward with. After speaking to triage, I received a phone call that made me really reflect on the multitude of reasons that led people to enter healthcare. After about five minutes on the phone with a nurse for the case management portion, I was asked two questions

Her: “Can you get to doctor appointments?”

Me: “Yes, I find rides all the time because I can’t drive more than 10 miles.”

Her: “Do you need help meeting goals?”

Me: “If by goals you mean symptom control, yes, but if it’s checking blood pressures and reporting back to my physician, then no.”

Then came the moment when I almost completely came unglued. The nurse, who was doing her job, calmly said, “You don’t meet the criteria for complex case management.”

My reply was as polite as I could muster at that point, “I just lost eight doctors, so I don’t have any appointments to get to, how about some help with that?”

I was told that it wasn’t part of their job and then the phone line went dead. Sitting back in shock all I could think of, was what if I was sitting at her desk? Perhaps some customer relation training should be part of the continuing education. I got over the incident as quickly as possible and then called back to triage for case management. We discussed what had transpired and then I was assigned a social worker, who has made the entire transition much easier. Neurology was going to be the next hurdle. I was due for a three-month checkup for my autonomic dysfunction and several other procedures.

These were due the beginning of December and I had given ample warning that if we did not stay on the same schedule for procedures, that I would end up in the hospital with a migraine. Let’s just say that my warning became reality. They believe me now.

Rebuilding a care team

We also found out that nobody in-network treats patients with autonomic issues. So, we were given the choice of two facilities to go to. We picked one and literally the beginning of May was when we had our first neuro visit. This was six months later than my previously scheduled one was supposed to occur.

We have been with this insurance provider for eight months now and still aren’t completely settled. Sometimes I have days that it is a full-time job just to return phone calls or update doctors. Plus, I have a case manager with insurance and a social worker within the facility. Remember the form that was mentioned at the beginning? Well, it got lost; good thing I kept a copy. It has been the guide for my care as we have been moving forward.  If I didn’t have case management background, I would be lost. I would have given up and my disease would have complete control. I never have given up easily and I don’t intend to now. Every day is a new one, full of opportunity, but this has been by far one of the largest challenges that I have faced in this entire illness.

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