Question for my fellow men with lyme.

I'm 35 as well. I got bit in 2015. Got very sick in Nov 2015. Out of full-time work by 2018. Out of part-time work by 2019 as illness worsened. I am very fortunate that I have a wife that loves me and makes enough money that we can get by. I had similar feelings, as probably most do, the first 4 or so years of my illness. I'm falling behind. I'm a failure. I'm not a "real" man" etc. etc.

Due to this, I read, and I thought. Then, I read some more, and thought some more. Read about other people and their battles with illness. Read different philosophies and philosophers. Read about the way nature works. Read about the way the world works. I would have never done this before I got ill. I was simply doing what you were supposed to do. No questions asked.

This strategy of "realism" isn't going to work for everybody. But for me, it has worked nicely. It helps to understand reality. We are animals. Humans before us have made great strides in the improvement of the human experience, but we, especially in developed countries, are delusional about what it means to be a human and the human experience. The idea of you are born, you have healthy childhood, as an adult you are healthy and get married, kids, accomplishments, career etc. etc., and you don't have life altering problems until you are old is an illusion for many. The only other person I know in real-life with Lyme struggles with these same thoughts. It isn't fair. He isn't successful enough. Why do other people our age not have problems? Well, there is no such thing as fairness. There is only the universe and the way it works. Fairness is a human conception.

My sister died at 33 of cancer. My dad retired at 55, but neglected his health and been living in misery for years and years not being able to enjoy retirement. Are these things fair? People experience undesirable things all the time. Somewhere there is a 35 year old getting a terminal cancer diagnosis today.

Society and it's contents....careers, social status, physical looks, accomplishments, wars, sports, houses, cars, the list goes on and on, these things have grounding in evolution( for example, social status and looks make it more likely you will pass your genes on), but many of these things are made up and subjective. Human ideas. Who's game are you playing? Why are you playing that game? Love, happiness, sadness, anger, depression, overwhelming joy, psychical pain.....these are all things that exist simply in existence. Remember what can happen will happen. I'm not saying the aforementioned thing about society are necessarily bad, however, too many simply accept the default status of putting these things on a pedestal and once something that happens naturally like illness and they are unable to achieve arbitrary goals laid out for them by society then depression hits.

Instead of focusing on the arbitrary things I don't have I've learned to focus on things I do. Gratitude is important. First of all, I'm alive. I exist. My state of being isn't perfect, but I got a seat at the table. I have a wife the loves me, two great dogs, and despite the financial difficulties of losing an income, I never go without a roof over my head, and food in my belly. As bad as chronic Lyme, PTLDS, whatever you want to call it, is; there has never been a better time to be alive living with this disease. I'm hopeful I will find something that increases my well-being. I doubt that I'll ever be back to where I was before my tick bite, but that's okay. I don't want that fast paced unhealthy life. I've learned so many great lessons through this illness. Hopefully, I will be able to recover to a point where my wife and I can more thoroughly enjoy the rest of our lives. Until then, I'll keep working at getting better, and I'll constantly remind myself that it's okay to exist in this form.

McLovin said...
Howdy men of HealingWell 😎. Quick intro :: 35 years old, Male, I have been infected with lyme for many years, I am still treating it, results have been a roller coaster.

Awkward topic but I am interested to know how other men deal with the emotions that lyme disease brings? In particular that feeling of having lost a lot of years of your life and that even if you got better today, that it is too late in life to accomplish certain things? I personally lost many things because of lyme and I know I'm not the only one. Am interested to hear your stories. Maybe we can help each other?

Do you guys bottle things up too?
Thanks!

Welcome to the forum!

I’m not a guy but my husband doesn’t talk to his friends like I do with mine. I can tell a few of my close friends just about anything… but hubby said he only talks to me about his feelings. Not his friends.

i'm a man, and in my experience it's like this:

- if you talk to a woman about your feelings, most of them will judge you for it just like purplelight said. and i agree women are often the ones that say that it's ok. it's usually a lie. i've only met about a handful of women in my life that actually cared.

- if you talk to other men about your feelings, there is kind of an unwritten rule that we don't and it usually doesn't really go that smooth anyway.

in response to girlie, it's usually different when you're married. but even in most marriages the women don't want you to be emotional. its a recipe for disaster.

so yeah i bottle my lyme disease issues up too and emotions in general.

Coffeeholic said...
i'm a man, and in my experience it's like this:

- if you talk to a woman about your feelings, most of them will judge you for it just like purplelight said. and i agree women are often the ones that say that it's ok. it's usually a lie. i've only met about a handful of women in my life that actually cared.

- if you talk to other men about your feelings, there is kind of an unwritten rule that we don't and it usually doesn't really go that smooth anyway.

in response to girlie, it's usually different when you're married. but even in most marriages the women don't want you to be emotional. its a recipe for disaster.

so yeah i bottle my lyme disease issues up too and emotions in general.

I don't agree with this. That's not to say these things don't happen, but I think you are overstating it. Maybe due to your anecdotal experience.

Every person is different. There are kind people. There are socio/psychopaths. There are narcissists. Choose wisely.

As a man, I think the idea of trying to find a mate as a chronically ill person would be challenging. But again, there is an evolutionary explanation for that. Many women in child-bearing years are looking for mates that can provide resources and protection even if they only do so subconsciously. I do believe that instinct can be cut-through if a close connection is established. We aren't slaves to natural selection especially if we are aware it's occurring. My wife and I were only dating for 9 months once I got bit by the tick. She married me 2 years later despite knowing my ill health.

Men sharing feelings depends on the situation. In close relationships, I've found you can connect deeper with male friends. Honestly, these type of people are who I would consider my close friends. My other friends, or casual acquaintances, you never get past the superficial level (sports, cars, blah blah....boring). Due to some growing in a culture where you are supposed to "man up" constantly some guys won't open up until you take the initiative. Maybe they will never feel comfortable enough to open up. As Bill Burr joked one time, men die of heart attacks at 50 due to their inability to admit a puppy is cute lol.

That's an interesting claim about women in marriages not wanting their partners to open up. Where is the evidence for that?

I partly disagree Girlie.

Emotions is a big word.

Do women want men to express their love for them more? Yes.
And any type of positive emotion towards their wives? Yes.

Do women want a man to sob about how miserable he feels? No.
At most maybe they will tolerate it a few times.

There's a lot of selfishness involved when people say it's ok for men to be emotional. It's not actually about the man. Food for thought: what makes (generally speaking) many men not open up about their feelings? Don't you think that if we had positive experiences with it, that it wouldn't be different?

I have 2 friends who can be emotional, not even that much, but more open than most guys. Almost every relationship they had has ended because the lady got sick of the "drama".

When asking about what the "drama" actually entailed, it were literally things like my friends expressing how they felt. I was skeptic at first, but they showed me pretty much all the text messages in both cases, it was a real eye opener to say the least. The nerve of them to say it was "drama" was a new low. I'll just leave it at that.

PurpleLight said...
I partly disagree Girlie.

Emotions is a big word.

Do women want men to express their love for them more? Yes.
And any type of positive emotion towards their wives? Yes.

Do women want a man to sob about how miserable he feels? No.
At most maybe they will tolerate it a few times.

There's a lot of selfishness involved when people say it's ok for men to be emotional. It's not actually about the man. Food for thought: what makes (generally speaking) many men not open up about their feelings? Don't you think that if we had positive experiences with it, that it wouldn't be different?

I have 2 friends who can be emotional, not even that much, but more open than most guys. Almost every relationship they had has ended because the lady got sick of the "drama".

When asking about what the "drama" actually entailed, it were literally things like my friends expressing how they felt. I was skeptic at first, but they showed me pretty much all the text messages in both cases, it was a real eye opener to say the least. The nerve of them to say it was "drama" was a new low. I'll just leave it at that.

If my husband is miserable - I certainly want to hear about it!
Jeez - why wouldn’t you want to know if the man you love is miserable ??

Hi and welcome McLovin,

I'm not a guy yet being a 65 year old woman I wanted to add my input.

I divorced my 2nd husband because he didn't reveal his emotions to me. I needed him to show his feelings and even break down and cry as that would have comforted me. Instead he let out his feelings by yelling at me for being sick at the time (this was about 20 years ago). At that time I didn't have a lyme diagnosis and went undiagnosed for about 5 years. I didn't need my husband (at the time) to yell at me when I was so very sick.

He was used to a healthy me who went to work, cooked, cleaned, entertained, etc. When I came home from work I was totally exhausted and went to bed and fell asleep. He would come home and yell where's dinner? To this day I don't know if he couldn't handle me being sick as I was a strong woman or what?

I do know then after I asked him to leave the house and find his own apartment I felt like a ton of bricks left me. Later on I wanted a divorce and he didn't. And then we even dated for a while after we were divorced.

Yet, if he was capable of pouring his heart out to me even a little bit I would have never asked him to leave. Why are some men like that? I don't know all the answers. I think part of it is the way men are brought up since they were young. Remember I was born 1956 so boys were taught not to cry, not to show their emotions, etc. They were taught to be tough and strong. Men are taught to be the breadwinners. How wrong that was. I don't know how it is today with men your age.

I'm not a crier myself as I tend to release my feelings on paper. Yes, I still have a pen and notebook where I write down my feelings.

Getting back to your question, yes, many men do tend to bottle up their feelings and I think from my own personal experiences with men that it's not healthy (hey, women do that too). Stress causes people to get sick (men and women alike). Stress causes disease and not just lyme but other diseases as well.

Ever wonder why most women live longer then men? I believe it's due to keeping that stress inside whereas women tend to vent to each other and let it out.

Early this morning I read TheDudeAbide's post (Dude, I wish you would post again) and I really liked when he quoted Eckhart Tolle:

“See if you can catch yourself complaining, in either speech or thought, about a situation you find yourself in, what other people do or say, your surroundings, your life situation, even the weather. To complain is always nonacceptance of what is. It invariably carries an unconscious negative charge. When you complain, you make yourself into a victim. When you speak out, you are in your power. So change the situation by taking action or by speaking out if necessary or possible; leave the situation or accept it. All else is madness.”

Best to you all and vent away okay? Let those tears flow and feel the release. Everyone here can and will get better. Sometimes we just have to make different choices and make some changes in our lives.

Denise

Hey mclovin! Welcome to the forum. I love your screen name 😁.

If you hadn’t guessed already from the previous line, I am in fact a girl 🤣. But I have experienced a lot of loss. I’ve been bedridden for about 15 years and basically lost what seems generally regarded as the best years of life. It’s been my experience that both men and women are pretty insensitive to the disabled. In school, when I’d keel over and say I feel like I can’t breathe and want to throw up, it seemed like the go to move of guys around me was to turn around and pretend nothing was happening and possibly walk away. I’d estimate maybe 30% of women would try to help me in that situation and about 5% of men. To be fair I was studying in a male dominated field famous for attracting the very socially inept. So it’s also likely many of the guys around me were totally lost as to how to render aid even if they desired to do so.

Overall the motto of people around me then and throughout my illness seemed to be, suck it up and move on. You should be ashamed of being anything less than healthy and competent so always hide it as much as possible and only allude to it in rare situations like you’re confessing some morally debauched habit. Generally I have been happy to find anyone who doesn’t hold to this view irrespective of gender. But yes, on average, there do seem to be more sympathetic women than men.

As always these things really need to be evaluated in a case by case basis. When telling family about some new health horror or grief over loss, my sister is more likely to roll her eyes and tell me to shut up and move on than my brother, though my brother is likely to be thinking it too. I think in the end you just have to find those rare people who don’t kick you when you’re down, or consider it a privilege that you share your vulnerable side, rather than an opportunity to yell at you.

I suppose this is an unfair oversimplification of people though. I think it’s a sad truth of life that people can genuinely love you and still thoughtlessly/unintentionally crush your soul to the point where you wish you were dead.

As for coping, this year was the first time I became seriously worried I might die. After the first wave of fear subsided some, I started to ask myself, if I knew I had one month to live, what would I want to spend that time doing? Then if I had one more year left, how would I want to spend that time? These questions, they don’t get rid of the fear or grief over loss, but they let me have some chance at not being completely consumed by them and focus on things I can accomplish rather than everything I can’t.

My faith also helps me since I believe this life is like the prologue to some infinitely long series of books. Every story needs to start with a conflict or tragedy and every life ends in tragedy (death). But I believe this life is only the beginning of an amazing story of triumph. I’m not saying this to belittle the loss, because it is truly horrible. But I think of myself right now like a hungry street urchin who just lost their last piece of bread. But it’s ok, because I’m about to be adopted by the Queen of England.

Post Edited (Bailey) : 11/16/2021 10:45:45 AM (GMT-7)

I cry often. Mostly in private it lasts for about 5 minutes then I start doing something else and forget about it. Im actually not sure if its related any type of infection. It started after I had multiple surgeries and came very close to dying, it was like I was slowly watching myself die. Made me realize it wasnt time, but ever since Ill just cry at times. I have never gotten mad, it some ways it might be a weakness. I just don't do it, I get mopey instead of mad. Drives my wife crazy I think she would rather I get mad at times.

Hi Dude,

I really liked your post so much and didn't think there was any gibberish. It was honest, thoughtful and made so much sense. I think you underestimate yourself even without any sleep. I remember when Georgia Hunter stated that whatever the Dude posts everyone should read it and I agree wholeheartedly. You have a gift of perception and insight in others that I for one appreciate.

Yes, I'm really enjoying Eckhart Tolle quotes. I don't know why I never heard of him before, duh! I have been reading his other quotes and they really resonate with me. Here's a list of more of his quotes that I have been reading:

https://ideapod.com/50-enlightening-eckhart-tolle-quotes-that-will-blow-your-mind/

If anyone is interested below is his free Course in Miracles (runs about 1-1/2 hours):

https://www.youtube.com/watch?v=0xzj53jpu94

Thanks again Dude!
Denise

llɐ ʇɐ ɥsᴉɹǝqqᴉƃ ʇou sɐʍ ƃuᴉʇᴉɹʍ ɹnoʎ ou 'ǝpnp ǝɯoɔlǝʍ ǝɹ,no⅄

After reading many of Eckhart Tolle's quotes I'm sure that his "Course in Miracles" would be my cup of coffee. Thanks for providing that link since I can only watch any video in short spans since I get interrupted quite a bit by my soon to be 96 year old Mom.

I hope Georgia Hunter is okay too. I guess he's probably very busy working.

Thanks again,
Denise

This is such a great thread with different ways of handling Lyme, emotionally, coming out and all the different attitudes.

The timing is ironic as one of my daughters sent me an email last night, basically, all about how watching me through the years going through Lyme has taught her that is okay to cry and show emotions when you feel you need to. Since all this started almost 20 years ago, she has only seen me "with" Lyme, rather than how I was before. There have been periods in those 19+ years I've been back to 85-90%, but much of it has not to that level. She is 22, so she has only seen glimpses of hoe I used to be.

The positive from it is I've learned showing emotions is not a bad thing, but showing crazy did not help anyone. And I've been to crazy, but that was before the Lyme diagnosis. I've learned to be more understanding and have dropped a lot of what I now see was playing my role as a dad who did not show sad emotions. Showed a lot of love, but hid the sad. Now I can show some, but I make efforts to not let it effect the psyche of my kids.

And though my kids come by a good bit, and my neighbor's 8-year-old daughter can brighten my day just coming over to talk, I have found God is always here. That is not meant to preach nor apologize for mentioning it. But if it weren't for the presence of God in my life, the lonely times would be so much worse.

And, of course, it it weren't for all of you on this site - I can't imagine not being able to come here and read all the different subjects and comments that come up daily. There is no overstating how great I find those on the Lyme board.