A Call to the Men Battling Chronic Illness Alone

It’s quite possible I’ve written these words for a post on Facebook, or an email to family and friends multiple times only to end up trashing it based on thinking I’d be viewed as weak, ridiculed for not being “man enough.”

Many times I wanted to reach out to a male friend early in my illness, but the thoughts of feeling inferior or weaker-than always stopped me like a 2-ton roadblock. As years have gone by, the majority of my male friends have all fallen to the side, not one asking how I was or if they could help. My friends silently watched me become a pale, sick version of myself and as time went on, I couldn’t understand why they’d avoid the conversation.

It’s as if I was no longer “man enough” because I’d become weak and sick. On top of that, people seem to assume I am able to process and handle illness better because I am a man.

It all began back in 2006 when I started having strange symptoms. It began with feeling lightheaded, a little anxious, low energy etc. However, pushing through it and not going to the doctor seemed like the right thing to do. My mindset was that I’ll just power through it and all would be OK.

A couple weeks in, things progressively got worse and came to a crashing head.

I was sitting in my office and remember my chest suddenly felt tight. I was having trouble breathing, the world felt as if it was closing in around me, and an impending fear of doom captured my every thought. I tried to grasp the sides of my chair and just breathe.

Instead I snapped. I truly thought I was dying.

Pushing my legs off my desk and thrusting my rolling office chair into the middle of a crowd of people, I quietly told another man in my department that I thought I was having a heart attack. I was quickly surrounded by a sea of faces, someone offering me water, someone trying to give me a Coke, another on the phone with 911 asking me questions. Apparently, I was ghost white. I don’t remember much after this point, just being rolled out on a stretcher thinking, “Man, what is everyone going to think of me?”

I woke up several hours later in the hospital, dazed, confused and wanting answers to what just happened. The doctor shared that I had just had a panic attack and needed to rest. I remember thinking, “No way, not possible.” I wasn’t afraid of much at all, what could I be panicking over?

My brain felt incredibly spacey. I felt detached from my body and all reality.

This would become a symptom I’d now come to call “brain fog” with the technical terming being “derealization/depersonalization.” In other words, I am stuck in a constant state of perpetual hell, constantly feeling detached from myself and everything around me. On top of this, I now had joint paint everywhere in my body, my heart was skipping, and I had difficultly breathing. More and more symptoms piled on as I began to leave the hospital.

I was lightheaded, dizzy and still had this impending fear of doom that had not passed.

I wanted to stay and have them do more tests but instead I “toughed it out” and with that, my boss took me to my car at work. I had no friends or family in the area and had transferred down there to start a new life for my family. My boss was incredibly nice about “the panic attack,” took me to my car, asked if I needed anything, and then sent me on my way.

The moment I got in my car and started it, that creeping feeling that felt so strong began to come on. I figured if I could drive fast enough I could get to bed and just sleep the whole day off. This didn’t happen. Instead I got 0.75 miles down the road, had full-blown panic, pulled into a hotel, threw a wad of cash on the desk and just begged for a room key.

I needed to curl up, my insides felt like they were dying.

I was convinced that at the age of 26 I was dying. I went into a dark hotel room, curled in a ball and called family from two states away to please come help. I was lost. I’d never been sick my entire life. My whole body felt as if it was on fire, failing and I was spiraling out of control. For eight hours I laid curled up in a ball petrified that my days were expiring at such a young age.

Going from completely healthy, running three to five miles a day, able to go out and live a vibrant life full of amazing memories, an incredible career and a newly-born son who captured my heart, to now thinking I’m dying.

Finally, a family member showed up at my hotel and sat with me. They’d never seen me in this state, they’d never seen anyone in a state like this period. They stayed with me the next couple days while I took a few days off work to see if this “panic attack and anxiety” would pass.

Unfortunately it did not.

I called some friends and family and once I told them I was “fine” in the words of the doctor, I was repeatedly told that I needed to “man up” and handle my responsibilities.

I went back to work after three days despite the fact that I was a mess, but I needed my job and career.

Upon returning to work the panic attack jokes started the moment I entered the department. I laughed along with them. They didn’t mean harm by them, they were being just being normal dudes, right? It’s what we do, we joke about each other’s weakness. “Bro, it’s just a panic attack, mind over matter.” “Hey man, you got this, muscle through it, you’re tough.”

The jokes and ridiculous advice continued through out the day. I was surprised I made it through a full work day feeling that sick. All the symptoms I had been experiencing came full circle and were hitting me harder and harder. On my drive home the panic struck again so I pulled into a gas station once again thinking I was dying. I remember hanging out my car as I begged someone to call 911. The ambulance eventually came and I felt like a fool for making a huge scene. I was worried I’d never see my young son’s face again. I resisted going to the ER to just be told that I was panicking.

Scenarios like this continued as my health declined and time and again, I would push through jobs.

In my experience, women would generally be understanding and compassionate, while other men would make jokes, not seeming to know just how much strength it would take to make it to work each day.

After two years of this, my body wasn’t able to work anymore.

I lived with depression, anxiety and extreme illness looking for other males to connect with. However, when I’d find support groups both online and in person, they were filled with women. Obviously there’s nothing wrong with this at all, but as time went on I realized that one reason there weren’t any men could be because men who are sick may feel intense shame for being sick. Due to this, the thought of connecting with other men and being vulnerable about their struggles can become a foreign concept.

Once I began using a wheelchair, I’d only leave the house with my hood up and sunglasses on. I was ashamed of my illness and didn’t want a soul to know who I was.

I have now been sick with late-stage Lyme disease for 11 years, and nine of those years I’ve been out of my career as a network engineer. I constantly have feelings of embarrassment and failure because I’m no longer providing the way I was accustomed to.

I went from a successful professional full of life and promise to a person who is at times so sick I cannot get out of bed and am forever trying to hide it from the world.

During these times of intense trial, it’s hard to find the motivation to pick up and keep pushing year after year seeing little to no improvement. This is often incredibly hard to do with lack of support. Generally my family and friends find it difficult, not knowing what to say when you look healthy. When many who are chronically ill begin to lose hope, they turn to online support groups, find a moment of strength in an inspirational post or meme, have crowds of online friends they have by their side that they’ve met during their struggle.

The unfortunate problem is 99.9 percent of these memes and posts are related towards ladies.

I feel it’s great how women can empower each other. I’d love to see men do the same, or even as a collective community of chronic illness we work to raise awareness and support towards men who are struggling.

Receiving support does not make us weak or less than. Quite the opposite — it’s a humbling act to take and receive help when you’re in a wounded state.

Many men stay in hiding while sick, seemingly afraid to speak out, afraid they’ll be perceived as “weak” and less of a man. Online support groups are saturated with women, adding a handful of quiet observing men who generally keep to themselves. I think society makes men feel as if they can’t talk about anxiety, depression and illness. Just look at the high suicide rates of soldiers, and studies have shown men may be less likely to share health or mental health problems for fear of backlash or ridicule from other men and or society in general.

So what happens when men get sick and lose hope?

Unfortunately I’ve seen many men, many fathers and husbands, die by suicide out of desperation for hope and help. I have seen many men being made to feel like they’re weak because they’re no longer a provider/contributor or the highlight of their day is being able to get off the couch to retrieve mail.

I’ve thought long and hard why so many men don’t encourage each other when they’re down. Maybe it’s a primal instinct suggesting survival of the fittest? Or is it much deeper than this? Has society made us think as men once we become chronically sick we are no longer masculine or strong? I honestly don’t know, but it has no place in modern society and as men continue to become ill, they will need places of support.

Men need the same sense of hope that can be gathered from women banding together.

Support can be universal regardless of sex, but sometimes it helps to have someone of the same gender and responsibility get what you’re going through and be able to relate on many levels.

I think men stay quiet because of the lighthearted jokes that are made about us needing to be strong, full of courage and resilient in our efforts to fight. Most men and women fighting this illness are the most strong, courageous and compassionate people I’ve ever had the honor of knowing.

With that being said, how do we get more support for men?

How do we encourage them to come out and let them know they’re safe from ridicule? How do we show them that it’s OK to be sick and that they didn’t choose this life? How do we assure chronically ill men that they can still be viewed as strong and masculine while fighting for their lives?

I have come to believe that fighting for your health is the toughest battle anyone can endure and it’s truly a badge of courage that not even the strongest of men want to carry.

I believe there is a silent outcry from males who are sick, and somehow we need to find ways to support each other and come out of hiding. Chronic illness, anxiety, depression, etc. are not things to be ashamed of as we are all humans with emotions and battles of our own. Some of the brightest moments during illness can come from the friendships, support, and encouragement that come from others. If we stay in hiding, we miss out on one of humanities greatest gifts.

We shouldn’t hide our stories of being ill and all the battles that come from this fight. Instead, we need to share them with others to inspire strength and hope.

We need to share just to let each other know “you are not alone.”

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Thinkstock photo by max-kegfire