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To Those Seeking 'Control' With Their Chronic or Rare Illness

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“We don’t know the future, much less control it. We like to think we do, but that never turns out to be true. And yet we continue to believe in the illusion of control. We face a chaotic and complex world, and seek to control it however we can.”

It was recently Undiagnosed Day. According to the Undiagnosed Disease Network (UDN), “An undiagnosed disease is a medical condition without a known cause, despite a lot of evaluation.”

One in 10 Americans struggle with rare or undiagnosed diseases. The known 7,000 different rare disease worldwide and the estimated 30 million Americans who live with rare diseases were once undiagnosed.

Undiagnosed is a diagnosis. It’s also a struggle many endure entering the arena of rare diseases. It is usual for a rare patient to know more than most doctors and specialists, which forces us to be the driver and traverse the vast system alone.

Living with the unknown and uncertainty of life is something both those who are undiagnosed and those who have a diagnosis must come to terms with.

Uncertainty is a friend of mine.

The unknown is uncomfortable for most of us, but we don’t know how much until it’s staring us in the face. For some of us the reaction is to become further unknown. Because we feel emotionally isolated, we choose to physically isolate ourselves.

What I have learned about uncertainty is life is to be lived and not controlled. As much as I’d like some control over my body and this life, control is merely an illusion…for all of us.

The illusion of control is a cognitive bias and one of humankind’s greatest delusions. It’s a tendency for people to overestimate their ability to control events and outcomes we demonstrably cannot influence. And when these unexpected events intersect our life and our best efforts to control it, we understandably experience frustration, anger, and even entitlement.

Believing we have such control can be an obstacle in itself.

I’m not saying to give up and leave it all to chance in a self-defeated “why try?” stance. We are not powerless and I don’t believe in destiny. I’m saying in the midst of chaos, for my own sanity and survival, I’m learning when to let go — when to be hard and rigid and when to be soft.

Taking from nature and its basic law and order, I’ve always speculated adaptability was the most important ingredient to getting through life and nothing could confirm this more than being disabled. I’ve learned to experience these uninvited chapters and flow with them as best as I can, however clumsy I may be at times.

How to handle this illusion of control makes it easier to find acceptance and focus attention on areas within our control. This can help reduce feelings of stress, frustration, unchecked emotions and even self-blame. It allows us to live for today.

Many obstacles can be doors to opportunities, opportunities for creativity, perspective and new ways of thinking. What is missing is often a state of mind. What is in our control is drafting plans to move beyond or even live in peace with the uncontrollable situation, while affecting a more positive or favorable outcome.

While the physical freedom of my body is out of my control, the freedom of my mind is something I can shape.

While I do believe a positive attitude is a great key to overcoming the turbulence of life, I’m often dismayed by motivational speakers and life coaches who sell it as something easy. For example the floating life coach and disability “awareness” memes like, “the only disability is a bad attitude” or “What’s your excuse?” as they flash a disabled person climbing a mountain or lifting weights.

I very much dislike these porn inspiration sound bites. While I agree positive attitude greatly helps us, it’s not as easy as its portrayed and often leaves us feeling guilty for not being as positive as “the other guy/girl.” Some people are more naturally positive, others it takes much work. Positivity and acceptance of life’s troubles is a process and for most a life-long one, especially when the struggle is so domineering like a disability or illness.

None of us have it all together; it’s a long journey of learning for all of us. The thing we are responsible for is starting that process — how long it takes varies for us all. Don’t be in a rush and forgive yourself if it proves more difficult than a meme.

There are many bends in the road.

Once a diagnosis happens, the path of treatment and/or cure will still most likely be long and uncertain, so I learned to focus on living my life and relish what is certain in the moment.

Balance the moments of grief and uncertainty with things you are most certain of like laughter, passions, family or friends.

Find where you and your heart would reside, with or without your disability or illness, and live there as often as you can.

Cry when you have to, be joyful in between. Find beauty in the ordinary.

Contrary to what we hear on television, the world is filled with much beauty and many who have given themselves to affect change. Those affecting the most change are often not the individuals who hold the most power over the system. Get involved, contribute to the beauty and find your voice. You are not powerless.

Please, don’t confuse acceptance with giving up.

While I’ve in a sense accepted the potential future and prognosis of my rare and very progressive condition, it doesn’t mean I have lost hope or the deep desire to push for a cure and even walk again because anything is possible. I’m reminded of great medical miracles, like Oliver Sacks who awakened decades-long catatonic patients, though I do my best not to be a slave to the more favorable possibility, either.

Don’t lose hope in your journey for a diagnosis and acceptance and don’t lose yourself in your diagnosis. We are more than our body.

For now, I take it day by day. For now, I do my best to live in the light of potential. Potential for treatment of my devastating condition, potential in myself and the life I can live, and the potential in all of us.

For those who are undiagnosed, know one day you will be seen. It took five years of five misdiagnoses and seven years to genetically confirm my final diagnosis GNE myopathy (aka HIBM). Not to mention all the years in high school and junior high when inexplicable things were happening to my body. I blamed myself and felt inadequate amongst my peers for something I didn’t know was a lurking genetic chance since birth.

Searching for a diagnosis was incredibly lonesome, isolating, and frustrating. I had to learn to be my best advocate and the situation commanded me to be more informed than the medical field. Had I not used my intuition, big mouth and sailed my own medical course, I would have probably accepted everything the misinformed medical field told me. So to all those struggling for answers, and still struggling once they find answers, all I can say is be your best advocate because you’re the only one who can or will.

Keep fighting, keep questioning, keep loud, and keep moving despite the fear of unknown.

The Master allows thing to happen.

She shapes events as they come. 

She steps out of the way

And lets the Tao speak for ‘itself.’


Originally published: May 3, 2018
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