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Guest Post: Men in Hiding-A call to courage for men battling chronic illness alone

I am very excited to have my VERY first guest post here at Ship with No Sails!

I met my friend Josh a few months after being diagnosed with Lyme Disease and Bartonella. We had some mutual local friends and after he heard that I was sick, he sent me a Facebook message with some words of encouragement and some resources. This is the kind of guy Josh is, even when he is sick he is ALWAYS worrying about others and trying to help.  Josh was an instrumental force in the May Day Project and has been an advocate for many with Lyme Disease and other tick borne illnesses.

Josh has been there for me through all of the ups and downs of my illness and has continually inspired me with his tenacious spirit. He is the father of two beautiful boys as well as a business owner, two tremendous feats considering that he has been sick with Lyme Disease and other co-infections for over a decade. Awhile ago we were texting about what it’s like for him to be chronically ill as a man since most online chronic illness communities are by and large female. This gave me an idea and I asked if he would write a post about his experience. So without further adieu… please enjoy this piece by my buddy Josh!

It’s quite possible I’ve written these words for a post on Facebook, or an email to family and friends multiple only to end up trashing it based on the thoughts 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 a one asking how I was or if they could help. My friends silently watched me become a pale sickly version of myself and as time went on, I couldn’t understand why they’d avoid the conversation like the plague.

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 that 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 light headed, a little anxious, low energy etc. however pushing through it and not going to the dr 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, 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. They dr 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 light headed, dizzy and still had this impending fear of doom that had not passed.

I wanted to stay and have them 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 .75 miles down the road, 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 2 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 8 hours I laid curled up in a ball petrified that my days were expiring at such a young age.

Going from completely healthy, running 3-5 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’ve never saw 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 dr, I was repeatedly told that I needed to “man up” and handle my responsibilities.

I went back to work after 3 days despite the fact that I was a mess but 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 sons 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.

Women would generally be understanding and compassionate, while other men would make jokes not knowing 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 sank into 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 there weren’t any men because men who are sick feel intense shame for being sick. Due to this, the thought of connecting with other men and being vulnerable about their struggles becomes a foreign concept.

The shame became my own once I became wheelchair bound. I’d only leave the house with my hood up and sunglasses on. I was ashamed of my illness and weakness 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 9 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.

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 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 family and friends find it difficult not knowing what to say when you look healthy. When most that are chronically Ill 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% of these memes and posts are related towards ladies.

I feel it’s great how females 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 suffering.

Receiving support does NOT make us weak or less than. Quite the opposite, its a humbling act to take and receive help when in a wounded state.

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

Josh and his son protesting outside the CDC office.

So what happens when men get sick and lose hope?

Unfortunately I’ve seen many men, many fathers and husbands take their life 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 most men don’t encourage each other when down, maybe 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 fall ill, they will need places of support.

Men need the same sense of hope that can be gathered from females 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.

Men stay quiet because of the light hearted 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 all males whom 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.”

 

 

About the author: Josh Cutler is from Myrtle beach, SC. When he’s not busy battling Lyme and anxiety related disorders (which is almost always haha) you can find him with his two boys Noah 12and Christian 4. As health permits he likes to coach basketball and is co-owner of a high end shoe boutique. Josh made huge strides when battling lyme both against the CDC and IDSA. He’s now shifted his focus to his boys and health.  Follow his journey on Instagram @jcutler1980

3 thoughts on “Guest Post: Men in Hiding-A call to courage for men battling chronic illness alone

  1. Thank you for sharing your story, Josh. I’m female but can actually identify strongly with your feelings of shame, since at the time I was diagnosed with Lyme I happened to be in a very narrow social circle with people who were extremely resistant to noticing or showing compassion toward what I was experiencing. The shame drove me to such a dark place that I thought I was going to simply drop dead. However, I can’t imagine what it would be like to face this kind of shame simply because of my gender. I guess being a woman has a lot of perks. I’m sending good thoughts your way and hope you can continue to find the emotional connections and support that you need.

  2. Thanks for speaking up, Josh. I’ve always been curious about men with chronic illness too. Totally agree that they need support too, and on societal expectations of ‘being a man’.

    As you mentioned, women are better at finding support and sharing their fears. Men perhaps find other means more helpful? I am curious to hear from a male perspective 🙂

    Wishing both of you a great day!

  3. Thank you so much for sharing your story Josh. I can identify with so much of what you have written here, even though I am a female. I have had Late Stage Lyme for nineteen years and it is a rough, uphill battle. You have such a powerful story, so nice to hear about chronic illness from a different perspective. Keep encouraged and thank you for speaking out on behalf of all Lymies.

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