Fearing I Will Make the Wrong Healthcare Decisions

Chronic disease predisposes those of us with myasthenia gravis (MG) to chronic worry. We rely on MG treatments to keep our symptoms under control, but we may also rely on other drugs or treatments for different conditions, and hope these don't lead to an adverse drug interaction or a flare of our MG symptoms. Understandably, this can lead to feelings of apprehension, uneasiness, and fear.

There are also other things that can complicate MG healthcare, intensify stress, and lead to difficult decisions. For example, cancer and other conditions that are more critical concerns to treat than MG. Another delicate situation for those with MG is surgery. It requires you to be diligent about emphasizing and reminding the surgery team about any medication you cannot have and the alternatives that are MG-safe, and trusting they will not make a critical error.

Trusting doctors

I trusted the first MG doctor I saw for several reasons, partly because it was the only appointment I could get sooner than months out. The doctor was in an academic-affiliated medical practice with other doctors treating MG, so there was some credibility. But mostly, I trusted that doctor because of the critical state I was in mid-crisis. I was unable to do any research on my own and was at risk of breathing complications if I didn't start treatment soon; I was hopeful for anything.

Recovering From mishaps and trauma

Some things went right with my initial MG treatment: My symptoms were under control to the point I no longer needed Mestinon within 9 months. But my doctor did start me with a high dose of prednisone, CellCept, and Mestinon all at once. So, there were a lot of side effects that quickly became more limiting than my MG symptoms.

I also trusted their decision to do the thymectomy as soon as my symptoms were under control. Still, I always wonder, (as I also do with the high doses of medicines I started with and am still weaning off) "Was it needed?"

As life goes on, there are going to be more mistakes or recommendations made by doctors that I question, that I add to my resume of medical mishaps and trauma. Including when healthcare triggers MG symptoms.

Unfortunately, healthcare not going according to plan may be unavoidable, as MG is a highly individualized disease. Every one of our medical misfortunes can make it more challenging to be confident with both doctors' opinions, their recommendations, and our acceptance and advocacy for ourselves when making future medical decisions.

Trusting ourselves

We have to make decisions about doctors, practices, or hospitals to be treated by, treatments, insurance, surgery, clinical trials, whether to follow up with a doctor about new symptoms, and if suggestions by our doctors are necessary. The most common thing I've run into is trusting my gut and own knowledge when deciding if I should agree to a doctor's recommendation. I frequently consider all the negative outcomes that could happen far more often than I think of what could go right.

When I ignore the positive things that have gone right throughout my healthcare journey, the fear and worst-case scenarios build in my mind. I have found this false narrative can destructively create a foundation for a mindset where everything I try to do to help my body ends up hurting it. It can also make me convince myself that unlikely adverse reactions or outcomes are more likely to happen (even if that's not statistically true).

Discounting the positive

Many times, especially when our health is on the fall, we may forget what has and is going right in our healthcare journey. For me, that can be any improvement due to treatment, the hard work I've have done, support from a loved one or their help paying for healthcare, insurance for existing when it helps me afford my care, medical/disability assistance, the medical and research facilities that contribute to my care, those that help me keep my life in order when MG gets in the way, the transportation and people that get me to and from appointments, and the doctors and others on my healthcare team that have dedicated their time to researching and trying to improve the lives of myself and others.

How we can gain confidence in our medical decisions

My tips for anyone experiencing this? Work on replacing the fear surrounding making medical decisions with confidence. Here are some suggestions:

• Restrict the amount of time spent searching for specifically negative patient experiences.
• We should not overwhelm ourselves with, but stay consistent in learning about MG and the options out there. So that if we ever find ourselves in various situations, expected or not, we can have baseline knowledge to compare with what a doctor is saying or suggesting.
• Investigate the credibility of sources from which we gain information.
• Be mindful of the nature of our inner self-talk. The conversations we have with ourselves in our heads need to be compassionate and gentle. We must support ourselves through hard times as if speaking to a close friend.