Why am I sick? The Question All Chronic Illness Patients Ask and The Causes of Chronic Illness

The following post is part of the The January Project: Chronic Illness. A month long project where I research and write about chronic illness.  The information presented in this project is intended for educational purposes only.

I am not a doctor. I am a teacher and writer who, while being afflicted with two chronic illnesses, is just trying to learn how to live a productive and peaceful life 

With this project I hope to increase awareness to comfort those living with chronic illness and to offer clarification to anyone who knows a person living with chronic illness.


Why am I sick?

Like a car accident, a chronic illness often comes without warning.

One minute you’re cruising along, windows down, radio up and the next you and your car are cartwheeling out of control through an intersection.

For me, the symptoms of my chronic illness happened overnight. Literally.

One day I was coaching and playing soccer and the next day my vision was blurry, my head was spinning and I barely had enough strength in my legs to climb a flight of stairs.

That was August of 2013.


According to the National Council of Health nearly 50% of Americans have at least 1 chronic illness.

Approximately,  161 million people are currently struggling fears and frustrations of having a chronic illness.


On September 5th an MRI of my brain revealed that I have cerebellar atrophy. In April of 2015 a muscle biopsy of my thigh revealed I have sarcoidosis– a chronic illness that causes muscular and organ inflammation.

And even with a medical diagnosis I wasn’t satisfied. My mind was cluttered with questions. Questions that spiraled from the origins of my illness to the existence of God.

Why did I get this sick?

What could I have done differently to avoid this fate?

Why is God doing this to me?

Hell, is there even God?

The uncertainty of a chronic illness unravels and unnerves you.

When unanswered questions snowballed I grew overwhelmed and  experienced a sort of moral freeze. I couldn’t think, decide. I couldn’t, as my old soccer coach would say, “get my shit together.”

These were and still are the hardest moments for me. The moments I’m still ashamed to talk about.

In life we’re taught to be curious, to explore, to seek until we find what we’re looking for. Like a high stakes of hide-and-go-seek.

But what happens when there are no answers?

Even after years of blood tests, biopsies, scans and observations I still don’t know what caused my illnesses.

Five years ago I would not attest that uncertainty is an opportunity for growth and change. But know I do.

I realized that not knowing why I got sick is what inspired make a greater investment into my health.

According to The Anxiety and Depression Association of America,  patients, of chronic pain and respiratory disease patients and others with disorders that require a lifetime of coping report increased levels of depression and anxiety.

In 2013, when doctors first identified my first chronic illness, I was an active healthy 33 year old man. I was 180 pounds. I went to the gym after work and played soccer and softball on the weekends. I didn’t smoke. Didn’t use recreational drugs. Sure I had an occasional beer but overall I ate a balanced, protein-rich diet.

So why me? What caused the illness? Was there anything I could have done to prevent it?

Almost five years removed from my original diagnosis I still don’t know know what caused my illnesses.

Research has found three potential origins of chronic illness.

My experience with chronic illness has taught me that knowledge is power. And though the origin of your illness may remain a mystery, it’s crucial to educate yourself on the origins of chronic illnesses.

Genetics

A former student once wrote a heartbreaking poem about how she was doomed to get dementia when she got older because all four of her grandparents had it.

It’s been long believed that since a chronic illness “runs in your family” you’re fated to get it.

And though genetics definitely is a factor of chronic illness, it’s not as determining as once thought.  As science has advanced, research has proven that “inherited” is not “destined”.

Certainly genes are important in influencing our health, but there is no such thing as chronic-disease genes.–The Disease Delusion by Dr. Jeffrey S. Bland

This is good news for my former student. She is not necessarily fated to get dementia.

The human body consists of 20,000 genes and if you think of each gene as a lock, it’s a matter of discovering which keys unlock a chronic illness.

Growing research suggests that the “environmental key” and “behavior key” are the two most likely keys to unlocking the chronic illness door.

Furthermore, one key may unlock multiple doors. Meaning that is you have one chronic illness you’re at a higher risk for developing other chronic illnesses.

Environmental

Environmental factors and chronic illness have a long history.

Historians pontificate that the fall of the Roman Empire was triggered by the high amounts of lead identified in their water pipes and in their drinking cups.  More recent research revealed that an exposure to lead can significantly drop a person’s IQ. And a child’s exposure to lead can be fatal. Mental illness spread across Roman. Roman leadership became weak and unstable and mighty Empire fell.

In her 1962 landmark book Silent Spring Rachel Carson, announced that environmental toxicity is one of the leading factors in chronic illness. Her researched centered on DDT and other agricultural pesticides and how they were responsible for an increase in cancers.

Exposure to toxins and chemicals, such as asbestos and mercury can cause inflammatory reactions which often manifest into a chronic illness.

Since modern people are exposed to a multitude of environmental chemicals, it sometimes impossible to identify which chemical is responsible for unlocking a chronic illness.

However, just knowing which chemical haven proven toxic, can help you avoid them.

Here is a list of common environmental toxins that have been linked to chronic illness.

Behavior (Diet, Stress, Age)

Though the existence of many infectious diseases have decreased over the last century chronic illness rates have dramatically risen.  

This increase is a direct result to the availability of unhealthy foods, drugs, alcohol and the fact the humans are just now living longer.

Diet

A poor diet is one of the biggest contributors to obesity, diabetes and chronic inflammation.

A health diet fuels a healthy immune system which has the strength and energy to ward off chronic illness.

A well-balanced, vitamin rich diet is the most proactive step a person can take to preventing chronic illness.

I was on a moderate dose of Prednisone for 4 years to relieve my chronic pain. And even on Prednisone I was still in pain. However, since I shifted to a total plant based diet, I am completely off of Prednisone and my pain is gone.


You can read a more detailed version of how I overcome my Prednisone dependency in the article, “How I Finally Kicked Prednisone’s Ass.


Stress

The connection between stress and chronic illness is a little more unclear however, stress, if not addressed, does suppress the body’s immune system making the body susceptible to developing a chronic illness.

When under stress a person’s heart rate, blood pressure, metabolism, digestion and muscle tension are all adversely affected.

However, not all stress is permanently damaging. Coping skills can help the body to return to normal rates. Yet when not addressed, stress becomes distress. And if a person has a genomic susceptibility to a chronic illness, the distress key can unlock a chronic illness.

This is why when a person is diagnosed with a chronic illness they are often urged to seek a mental professional help, to learn stress management techniques.

Age

Aging causes changes to our immune system, which makes us more prone to developing a chronic illness.

And though we can not avoid aging we can adopt a healthy aging lifestyle that help delay or deter the onset of a chronic illness. This includes a healthy diet, exercise, limiting alcohol consumption and keeping yourself mentally active.

Final Thoughts

Research has found that chronic illness is unique to each physical body. One medicine doesn’t heal the masses.

To the veterans of chronic illness and to the newly diagnosed–I learned the hard way that you have to design an action health plan that is unique to your body. You have to conduct research, trust your body and invest in your health.

 

What You Need To Know About Men Who Have A Chronic Illness And The Shame They Feel  

The following post is part of the The January Project: Chronic Illness. A month long project where I research and write about chronic illness.  The information presented in this project is intended for educational purposes only. My hope is to increase awareness to help those living with chronic illness and to offer clarification to anyone who knows a person living with chronic illness.


They were tough. They carried all the emotional baggage of men who might die. Grief, terror, love, longing–these were intangibles, but the intangibles had their own mass and specific gravity, they had tangible weight. They carried shameful memories. They carried the common secret of cowardice barely restrained, the instinct to run or freeze or hide, and in many respects this was the heaviest burden of all, for it could never be put down, it required perfect balance and perfect posture. They carried their reputations.

— Tim O’Brien The Things They Carried

No one prepared me for the shame that came with a chronic illness diagnosis.

In the initial doctor appointments, after I was diagnosed with cerebellar atrophy, I was offered pamphlets on healthy eating, effective communicating with your spouse and the importance on scheduling and keeping doctor appointments.

But no doctor leveled their eyes into mine and explained that along with the physical ailments of my illness I was going to feel shame. Heavy coats of shame that weigh me down, make it hard to move, hard to breath.

No doctor warned me about the shame I feel every time my children ask me to ride bikes with them or my friends invite me to play basketball or the light bulb burns out in the hallway and I have to ask my wife to climb a ladder and to change it.

Somehow the male ego has skirted 200,000 years of evolution.

Both ancient and modern males fear weakness and dread failure. They crave strength and victory. They pride themselves on being a provider and protector.

Modern men avoid doctors appointments and hospitals and undersell pain (except when we have the flu). We don’t admit when something is wrong or even acknowledge something that may be perceived as weak. When something bothers us we often emotionally recoil. We become distant.

Men we would rather be labeled a loner then a loser.

Because men define themselves by their ability to do impressive things. Things that require strength and stamina. We are independent, prideful forces who find and polish important hunks of our identity from our ability to do physical things: run, jump, climb, protect, carry and build.

So when we are suddenly dependent, when we lose our physical abilities, our capacity to do impressive things– we lose ourselves.

For 33 years I defined myself by the games I played. I was an athlete.

Here I am with a close shave (and a broken arm) playing against Arcadia University (October, 1999).

As a child and through my teen years I played soccer, baseball and basketball. In college I played varsity soccer. Throughout my 20s and into my 30s I coached high school soccer and played third base on a competitive softball team.

Then I got sick.

I was unceremoniously forced into retirement.

I was patient now.

A weak and wounded patient.

Normalizing: A Crucial Step.

Research has shown that “normalizing” is a crucial step for anyone, especially prideful males, living with a chronic illness.

Normalizing means a willingness to adapt to a new life of chronic illness. It’s having the integrity to be more resourceful and find or invent ways to minimize the impact the chronic illness has on daily life. It also requires letting go of the past, letting go of dreams and aspirations  and placing a greater value on the present.

However, when a patient refuses to normalize their illness by hiding their limitations, a patient may cause additional physical damage as well as deepen their shame.

When ill people normalize symptom control and regimen, they increase their capacities and maintain normal health.

Theoretically, normalizing is a logical step for a chronically ill patient — refusing to let a chronic illness control your life, forge your identity.

I learned that normalizing can take years of accepting before conceding. For me, normalizing meant my chronic illness had won. It meant I was a loser.


A side note: The difference between shame & guilt

When I began this research, I was interchanging shame and guilt.

Though shame and guilt are close cousins, there is a distinct difference between the two.

According to Dr. Brene’ Brown:

Shame is a focus on self. Guilt is focused on behavior. Shame is “I’m bad.” Guilt is “I did something bad.”

With some digging men can admit guilt. But shame is much deeper. Shame is buried. Shame needs an excavator.

Men are not immune to shame.

We often just hide it better than women.


I still wrestle with shame.

It’s been five years since my initial diagnosis and I am still trying to  normalize.

And I know I shouldn’t be ashamed of my illness but some days I am.

I am a husband and a father. The leader. The patriarch. I am suppose to be physically strong. My family expects me to be strong. You expect me to be strong.

But some days I’m not.

Let me be clear– this was a really hard piece for me to write.

I’m prideful. I’m concerned about my reputation. I’m worried about what you will say about me when I’m not around and if it will be awkward the next time we see each other.

And yet I know if I do not announce my shame I will continue to struggle to normalizing my chronic illness.

I want you to know I have never talked to anyone before about shame.

Ever.

Shame has never been a hot subject between hands at a poker game or between bench press sets at the gym.

(In fact while writing this, I kept thinking about what the guys in my fantasy football league would think and say. How much ribbing I would take at the post season banquet.)

It’s much easier for men to silently struggle with shame.

So we do. We build facades, we deploy smokescreens. We lie to you. We lie to ourselves. And we do the thing we’ve been trained to scorn the harshest–we hide.

According to Dr. Brene’ Brown, shame is highly attributed to addiction, depression, violence, and suicide.

I personally know men, seemingly strong men, who have fallen victim to all of those dangerous behaviors.

And I know if I didn’t create Write on Fight on and share my story with you, I would have fallen victim myself.


Here are some resources if you want to learn more about shame…

I highly recommend watching Dr. Brene’ Brown’s Ted Talk “Listening to Shame”. The 20 minute talk offers tremendous insight on how damaging shame can be. I personally enjoyed the last 5 minutes where Dr. Brown  discussed how shame affects each gender differently. Also, this video  provided me some much needed motivation when I was afraid to write this piece.

The Handbook of Social Studies in Health and Medicine– It’s a bit technical but provided interesting research on experiencing chronic illness. You can find many excerpts of the book on “Google Scholar.” I found Kathy Charmaz’s Experiencing Chronic Illness (2.6) really helpful with my research. 

Shame is Why We Fight— Published on thegoodmanproject.com, this article explores how and why male shame is often the root of tension in a marriage, and if not addressed, can quickly deteriorate a marriage.


Related Original Writings on Masculinity, Shame and Chronic Illness:

The Scary Work of Redefining Yourself (Originally published on November 3rd, 2017)

The Day I Learned I Could No Longer Jump ( or Learning to Fly) (Originally published on October 26, 2016)

A Vulnerable Man