Managing the medical anxiety triggered by a single phone call
An insurance issue prompts memories of past traumatic experiences
It started with a phone call.
Our daughter Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, was due for her annual neurology appointment. Things had been pretty quiet with her health since her treatment plan was implemented almost four years ago. Grace has responded well to her daily medications — 70 mg of Firdapse (amifampridine), 180 mg of Mestinon (pyridostigmine), and 150 mg of Imuran (azathioprine) — as well as Rituxan (rituximab) infusions every six months.
Yet, the peace and calm we’d enjoyed were broken with one phone call.
My anxiety skyrocketed when I saw the Mayo Clinic’s phone number. They had already reminded us of Grace’s upcoming appointment, so I immediately knew something was wrong.
Sure enough, the representative said Grace’s referral wasn’t approved for her visit and we would have to pay out of pocket until our insurance approved it.
Instantly, I had a physical reaction to this news.
My hands started tingling and my breathing quickened. My heart began to race and I felt lightheaded. I asked if we could reschedule to give me time to figure out the paperwork.
That phone conversation set in motion a week of heightened anxiety and sleepless nights. Restless days abounded as I maneuvered our healthcare system and fought through red tape, trying to figure out why we had an interruption in service.
The scars left by medical trauma
You see, five years ago, when we were seeking a diagnosis for Grace, we fought hard for what she needed to survive. We argued with medical staff to get her timely appointments. I researched available treatments and how we could get them approved by our insurance company for off-label use. We petitioned our healthcare system when the doctors she needed to see were out of network.
It was all-consuming and emotionally and physically exhausting.
Thankfully, once we got a diagnosis and treatment in place, things settled down. But the emotional toll of that traumatic time left scars that no one else can see. I still have heightened anxiety due to prior medical experiences.
Medical trauma is a real thing. When I walk into certain healthcare facilities, tears immediately spring to my eyes as I remember earlier visits. I feel like I can’t breathe when I walk into the hospital where a staff member was so callous in delivering bad news.
Misdiagnoses, unnecessary and painful procedures, and insensitive or rude medical workers add to the trauma of the experience.
Over time, I’ve learned tools to manage much of my medical anxiety, such as intentionally slowing down and taking deep breaths. I also find that making a list helps me focus on what needs to get done first.
In addition, I consider who I can call to get answers. This often means enlisting the help of trusted medical professionals. In this case, we have a great working relationship with Grace’s primary care doctor, so I reached out. Thankfully, he was able to get to the bottom of the mix-up and help with the necessary paperwork.
It’s a reality that we will experience more anxiety as Grace moves through life with LEMS. There will be challenges, but we will face them together. So, I equip myself today with tools to help squelch the overwhelming anxiety of tomorrow.
How do you manage medical anxiety? Please share in the comments below.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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