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Learning to Live With Uncertainty in Chronic Illness

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It is high alert across the globe right now. With all the misconceptions and different information, the one thing ringing true is that anyone who is elderly or in a high-risk category should take precautions.

This had me thinking about a time not too long ago, that I would not know if I was considered high risk. It was some of the darkest hours, weeks, months and years of my life.

Yes, you read that right. It was a total of 18 years from the onset of my first symptoms. At the two-year mark I was diagnosed with probable multiple sclerosis (MS). It took additional 11 years after the episode that changed my life forever.

I would from this day forward need mobility devices to get through everyday activities. The right side of my body became something I would carry, not count on.

There were many times during these years when I would see a specialist and the notes they added to my chart would hinder my diagnosis.

Then there was several acute medical conditions and a car accident that sent symptoms into a tailspin. That would send us down rabbit holes.

I am here to tell you that undiagnosed is a diagnosis. If you are walking through this darkness, you are not alone!

The best advice was given to me by a neurologist. He told me he had a patient who had a burning tongue. They could never figure out the reason and you could not see the pain on the man’s tongue, but it didn’t mean his tongue did not burn.

There are just some things that we do not understand. There are somethings we just have not named yet.

Doctors are practicing medicine and there are many diseases. Yes, they are the experts, but there are things that happen that cannot be explained.

He told me that day, while my diagnosis of probable MS was still true, I had to many factors to point in other directions. Maybe I had something we just haven’t figured out yet.

Many chronic illness cases are hard, because they cannot rule out other possibilities. This taking decades in some instances to conquer.

I left his office a little more confident with the reassurance that my body had enough evidence to provide many diagnoses. It was placing the puzzle pieces together to fit a mold that was hard.

My progression over the years was gradual and steady. Meaning each year, I was able to do less and less and it seemed I was having what we called “episodes” more often. We now know these episodes were relapses.

Still not knowing was hard for loved ones to accept I indeed had something going on.

It is not like I carried my MRI results with me to show them the lesions on my brain or reports from the doctors. Trying to explain the process to anyone was daunting and took so much out of me.

Looking back, I learned that I am the one who lives in this body — why did I allow other’s opinions to cause me more pain!

I isolated away from everyone. It was dark, lonely and I craved the affection of someone to please just show me some light.

I did eventually find light by picking myself up through my faith. I found a new me in that light. Even my calling to write. This is where many of us find we are warriors. It was not anyone else who helped me battle this war. Most added to the enemy lines through their actions and words.

For me, this is what I needed to find  — that I didn’t really need the diagnosis as much as I needed to accept what was happening. I had to accept that I may not get a diagnosis, but it wasn’t going to change the deterioration going on in my body.

I had to grieve my old self. My old life. My physical body was breaking down, but my heart was the casualty.

Finding peace during the process took the power I gave away and placed it back in my possession.

I want to be the person to tell you that in the dark undiagnosed place, there is a person who needs you to love them for who they are today.

Give yourself a break and shine the light on your own heart.

Pull yourself up and stop fighting for a name of a disease. Instead fight for the name of the person in the battle.

Not having a diagnosis is one of the hardest places to be, you have the urgency to get a name so you can plan your fight. Plan your action. Having a name allows you to fit in with what others expect.

What if though the action that is needed is for you to stop looking for what is wrong and live in what is right?

These are hard words to hear. I know, I was there for many years.

You may not get a diagnosis, you may get a terrible diagnosis, you may get a diagnosis that helps you breathe easier.

I can only promise this. When you stop fighting for the diagnosis and start fighting to live your best life, you won’t look back and regret wasting any time.

There will be a day that the disease you once didn’t know the name of is now the name you wish you didn’t know.

Photo by Molly Belle on Unsplash

Originally published: April 22, 2020
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