The Fear of Feeling Better When My Visible Symptoms 'Validate' My Illness

My next neurology appointment is in a couple of days, and every time I anticipate the exam, I cannot help but reflect on the 12 year-voyage my illness has thrusted me upon.

For the last decade, I have been walking the wobbly plank of myasthenia gravis and attempting to reintroduce balance and stability where there is none. Now, as I am thankfully getting better (to the point where I can live a comfortable life), the fear of a “tipping point” and falling into new territory yet again scares me to my core, and I don’t know if I’m ready for it. The majority of my life has been a defense against my own body, and I grew into the role of a professional patient. The little girl I had grown into was attacked by MG; I had to pick myself up by the bootstraps and protect the new Meridith I discovered.

As I slowly but surely get stronger, my reality is evolving and everything I have just now begun to get comfortable with is fading away. To lose my ability to chew, swallow and speak (to name just a few) will never be forgotten. Those physical feelings and the consequential emotions that came after are engrained in my memory; however, as my strength increases, I begin to wonder: is my experience less real to others just because I do not feel those symptoms to the severity I once did? Will my word ever be trusted or good enough?

The thing is, even when my symptoms were at their worst, many never fully appreciated my lived experience. So why would I expect that now?

I understand that my lifeline in these different phases of my illness is to trust my instinct, my gut, my heart and my memory because there will always be people questioning my intentions, my actions, my approach to life. Yet, there is this consistent fear of not feeling the symptoms assigned to me to an expected degree. On some twisted level, the symptoms that distinguish my illness are shields of armor; they have the duty to protect me from any doubt or hesitation because there is legitimacy in the display of physical struggling. People often wonder: if the drugs are working and you look fine, what seems to be the problem?

The problem is that chronic illness is not as black and white as people make it out to be, even when a clinical diagnosis has been properly identified. The state of one’s disease can seesaw between various stages at different points in time. At one point I felt helpless, at times I am required to depend on others and I am continuously redefining who I am because of this illness. Currently, I finally feel like I have mastered the management component of this disease.

As I have reached these later stages of expertise and owning my self-worth, I see myself attempting to meet all these expected competencies of a young adult when in reality that is not always feasible because I do indeed still have myasthenia gravis.

Many people will say to me, “Look how far you’ve come” or “You are so much stronger than you were before” and I am – I know that. Somewhere down on sea level I am proud of the accomplishments I have mastered, but I am also frightened that my current state of disease will not be validated by others just because I am in a “good place” in my life. I still struggle every day, fight every day… but I also don’t want to be that person who always has to prove her illness to others. I am my own person, and I do have strong days, I do have weak days and every day is filled with unexpected tidal waves or calmness of the sea, but I just have to remind myself that whatever “state” or “stage” I am in in life or in illness, that is where I need to be and I will not give anyone the power to dictate how I am feeling or how I should feel based on that.

For so long I have learned to be practical, efficient and always make “smart decisions.” It’s exhausting always making the right decision and for once I would like to not have to worry about making a wrong decision or fear judgment being placed on me because I knowingly have an illness. It wouldn’t be appropriate to make that decision because of what I know.

I never made reckless decisions or careless mistakes because I was so scared of the judgment that would be placed on me because “I knew better” with a chronic illness.  For once in my life it would be nice to just live and not necessarily think about every consequence that will occur based on the decisions I make throughout each day.

Do I gamble the risk and face the potential of being judged and also judging myself? This perfectionist mentality within me is not something I recommend to others, but it is an innate quality I cannot deny.

Or, should I be applauded for thinking and acting practically, logically and never missing a beat? I am challenging myself this year to not fear failure, not fear mistakes, not fear imperfection. Let’s be honest: this disease is so rare anyway that it’s not like you would know the “right” way to handle it, right?

No matter where this disease takes me, I will use it to guide me towards that tipping point. Yes, it is a scary place to go to, but I am willing to risk the fear of the unknown.

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Thinkstock photo via pecaphoto77.