2/11/2020 by Share Your Story

Living With Migraine and Healthcare Anxiety

Healthcare anxiety makes you feel like you're walking on thin ice. One day you're covered, but with the smallest change, tomorrow becomes uncertain.


Healthcare Anxiety. Today, you’re covered. You fill your prescriptions and everything is fine. Then, you get married, or move to a new state, or your doctor retires – now life is totally unstable. Will you lose coverage? Have to train a new doctor? Can you still afford the healthcare to which you have grown accustomed? That fear that it can all fall apart in an instant – that’s Healthcare Anxiety.

I had a conversation with Taylor Handloser Bohn who explained her healthcare anxiety and her migraine and what she does to cope.


NECK AND MIGRAINE

When Taylor was 20, she developed chronic daily migraine disease. This coincided with a structural problem in the bones of her neck; a condition called Craniocervical instability (CCI). CCI is a condition normally associated with connective tissue disorders like Ehlers Danlos Syndrome, though that was not Taylor’s case.

Like most folks would, Taylor looked for a solution with her doctor. She saught effective treatment for the pain and swelling in her neck. That was one issue – but trying to find a working treatment for migraine was something different. It started her on a long journey, seeing different doctors and trying different treatments.

“I’ve been to neurologists, I’ve tried ten plus different treatments, including prescription drugs, but none of it helped.” She even tried gabapentin but that left her with terrible side effects. In particular mood-related effects, like suicidal ideations. Now, Taylor takes nothing, not even over the counter ibuprofen.

Taylor did the right things, faithfully trying everything her doctors could suggest, but even now, she still experiences migraine every day.

A NEW PROBLEM MAKES EVERYTHING HARDER

Then around the Summer of 2018, Taylor was following up on some symptoms of GERD and gastritis that were bothering her persistently. Suddenly, she was diagnosed with a disease she had never heard of before – gastroparesis. Gastroparesis is a form of digestive tract paralysis where the stomach is essentially paralyzed. It isn’t rare by the NIH definition, but it is poorly understood and the population is under served.

Gastroparesis put a lot of restrictions on what Taylor could eat and when. What was even worse, Taylor found (as do most patients with gastroparesis) that she couldn’t absorb drugs by mouth. That meant almost none of the newly available treatments or preventions for migraine were available to Taylor. And that hasn’t changed.

CHALLENGES TO ACCESS

Taylor explained that “The challenges of getting and keeping access to treatments are so large.” And the problems she cited are things not easily fixed.

  • lack of transport – “Like for me, my car is so unreliable I can’t risk going too far for doctors. That limits me so much because I live in rural West Virginia.”
  • money for expensive specialists – “I also deal with so many different symptoms that being referred to a specialist every time something new pops up just isn’t something I can afford on Social Security Disability, even though I have good insurance.”
  • cost of tests and medications – “I already have to space out my motility-specialist visits so as not to bombard us with extra costs.”
  • “On average I also see a regular clinic doctor three or more times a year for general stuff – strep, or an ear infection, allergic reaction, whatever. I can’t ignore those things because my immune system is not great. So, it all adds up terribly.”

EFFECTS OF LIMITED ACCESS

Taylor went on to explain something very disturbing but not uncommon to people living with chronic illness. Namely, healthcare anxiety. Healthcare anxiety is a byproduct of the structure of her healthcare being so fragile that she’s afraid it could fall apart at any time.

  • A cost could go up unexpectedly, and she doesn’t have room in her budget for that
  • Her disability will be challenged, which could take a long time to resolve
  • She could need a prior authorization and not get it
  • Her car could break down and she’d miss an appointment, then it would take ages to get a new appointment

Taylor’s concerns represent a lack of confidence in the healthcare infrastructure that more and more patients are feeling nationwide.

Taylor3

FINDING A BALANCE DESPITE HEALTHCARE ANXIETY

“Finding and maintaining balance is hard, and I’m not exactly great at it. However, finding the right support system and keeping a positive mindset makes a world of difference for me. I am not happy I’m chronically ill obviously, but knowing how to find joy in this world despite illness is crucial. That joy can come from different places for different people: nature, spirituality, animals/pets, etc. For me, my spiritual beliefs play a big role. My husband really helps me find balance too – we’re a really good team.”


Taylor BohnTaylor Handloser Bohn was diagnosed with chronic daily migraine in her early 20s, along with neck instability, bulging discs, and osteoarthritis in her C 2-3 facet joint. She became disabled as a result. She was then diagnosed with Gastroparesis which severely affected her quality of life and worsened her migraine disease due to malnutrition and dehydration. Taylor’s husband Joe is a chef and musician and she has an American Pitbull Terrier and she loves them both. She’ll be hiking/camping in the mountains or enjoying being out on the water whenever she’s well enough. Her playlist is diverse but heavy on the metal and blues. Instagram Facebook  


From the Editor:

Healthcare Anxiety” – a state of worry, nervousness or unease about one’s access to healthcare.

Hi Friends, Jim here. So you may have heard of the term “Health Anxiety” which means what it sounds like, anxiety about one’s health. But I couldn’t find a name for a person having anxiety about their access to healthcare, so, as a writer, I coined the term “Healtchare Anxiety”. It comes from cases like Taylor’s where a person isn’t sure if their healthcare is stable enough to sustain them. When a new prescription may cost more than they can afford, or one’s insurance plan might suddenly stop approving the treatment you need, or when a life status change could leave someone without access to their specialist – concerns that the fragile house of cards could collapse at any time.

Tell Us Where It Hurts:

Are you experiencing healthcare anxiety like Taylor is? We’d like to hear what you have to say about it. You can tell us your story by following this link, or you can email our Director of Patient Content, Jim Sliney, at jsliney@patientsrising.org or you can even leave me a voicemail at 202-788-2958.


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