Writing

On Being Alone with Fibromyalgia

Today I ran across an article on Medium.com, the title of which struck a latent tone in me. On ‘Going Away’ was written by Julieanne Smolinski, a thirty-something writer struggling to deal with being back on the dating scene after her first and only “true love” break up experience. A lot of the things she mentions thinking about while remaining unmarried in her thirties were very familiar to me. I have thought a lot about these as well, only from the perspective of someone about thirty years further down the road of Life.

I struggle to find myself, single once more after being divorced from my “life partner” of over forty years. I wonder if I am also “meant to be alone.”

I grew up alone. I should be used to it by now. I had no siblings and my parents (my dad and stepmother — my mother passed away when I was six) really didn’t spend much time advancing a great parent-child bond. They pretty much just wanted me out of the house and out from under their feet.

Their desire for my absence didn’t work out quite as they wanted. A naturally gregarious child, my mother’s early death had left me extremely introverted, and because of my dad’s work, we moved a lot, so friends were hard to come by. In fact, I got bullied a lot for just being the new kid in school. So I hid in my room and read. In the pre-internet world, I found friends and experienced the lives of the characters in the books I read. Even the worst villains in books were much safer than the bullies who lay in wait around every corner in my real life.

Yet, despite the joy I found in books, I ached with loneliness. I hated being alone.

Shortly after I left home at eighteen to join the military, I was lucky in that I found a man who loved me; a man who, as I believed for over four decades of marriage, I could trust to always be there for me. We married, had kids, raised them and then were back to just being a couple again.

This process of marriage and parenting was not an easy one. As most of us find out once we get into the meat of adulthood, life always has its ups and down. Family issues developed, a normal thing in any family group, but for the most part we clung together. Held each other up. We always stood together. I always thought we weathered the storms well. But maybe not. Periodically, problems not properly dealt with at the time later bubbled to the surface, seeming uglier than ever. We either dealt with them, or re-stuffed them, depending on their importance in the current day’s struggles. Looking back, I think we probably stuffed a lot more than we really dealt with them, but at the time it felt like we were doing well at maintaining our equilibrium in a difficult world.

Of course, work was a constant stressor for me, especially after I fell down a flight of stairs when I was 38. The damage caused by that fall made working harder and harder for me as time went on. And all the emotional pain of my childhood and the ups and downs of marriage, combined with the physical pain of the injuries from that fall, turned me into a bundle of screaming nerves.

By the time the kids were finally out of the house, I was living my daily life with horrific pain. My body just didn’t do what I told it to anymore. I gradually lost the ability to do even normal, everyday things. Multi-tasking, something I had always been pretty brilliant at, became impossible to do. I found it hard to concentrate. Even reading a book became a chore because I couldn’t concentrate on the words for more than a few minutes. I easily got lost on the page I was reading and would have to re-read it again and again. It seemed like I lost days and days on end wrapped in a blurry blanket of something I later learned is called “brain fog.” This was a scary experience for someone who loves the written word as much as I do.

I slowly let my husband, sweet man that he was, take over most of the chores around the house because I simply did not have the energy to do them. This was definitely not fair to him, but I had no choice. The pain I was experiencing was horrific and the exhaustion I lived with was pervasive. Work took more and more energy until I felt like I had run a marathon by the end of every day. I could only hold the exhaustion off so long before I seemed to hit a wall that stopped me in my tracks.

By the time I got home from working a full day, I felt as if someone had beaten me with a baseball bat. Half the time I would go straight to bed with a migraine, or anesthetize myself with a few drinks and a handful of over-the-counter anti-inflammatories. I began using my sick days more and more, which made my bosses look at me suspiciously. Depression crept into the corners of my mind and made a home for itself there, gradually strangling and killing all the joy I’d had in my life.

Seeing my life falling apart by this mysterious illness that I couldn’t find a way to get away from, I began experiencing severe anxiety. I thought others must surely see that I was losing my edge and I had frequent panic attacks that I would lose my job because I just couldn’t handle it anymore. I lost faith in my own abilities.

As time went on, my husband had difficulty believing my pain and exhaustion was as bad as I claimed. He resented what must have seemed to him like sheer laziness and self-centeredness on my part. I can imagine he was wondering what had happened to the fun girl he had married. He often asked me if I had just stopped loving him, which was no where near the truth. Unfortunately, no matter what I told him, he believed this lie rather than accept that there was something physically wrong with me that couldn’t be fixed.

When I was finally diagnosed with Fibromyalgia, he had even more difficulty dealing with the disease than I did. After all, the medical community at the time did not really understand the disease, let alone know how to treat it. Even many cancers and heart disease now have treatment plans that keep people from dying from them as they had once done. But Fibromyalgia has them stumped.

At the time I was diagnosed, most of the medical profession didn’t even believe Fibromyalgia was a real illness. Many still don’t. They all believed it was all in the patient’s head. New doctors often told me the Fibro diagnosis made by another doctor meant they were just too busy to actually look for a “real” cause. Many doctors just thought “Fibromyalgia” was a catchall phrase for lazy medicine. It didn’t help that Fibromyalgia patients had many other physical problems (called co-morbidities) complicating this condition of horrific muscular pain and exhaustion destroying our lives. And because it did not kill the patients who had it, no one really dedicated studies to figure it out what caused it and how to cure it.

As a result, Fibromyalgia became an invisible disease that has decimated the lives of millions of people around the world. No one can see it’s effect on you, so it doesn’t really exist, right?

Of course, the medical profession is trained to ease pain. At the time, that meant prescribing drugs to combat the many symptoms we all described. And Big Pharma was happy to design more and more drugs that were supposed to help, but really didn’t. In fact, many of the drugs made it worse or caused serious side-effects. Doctors would treat one symptom with one drug, then treat the next emerging symptom with another one. Before long I was literally a Walking Dead from all the drugs they had me on. Looking back, it’s a wonder I could function at all! I am still surprised I did not overdose on them as so many others have done.

Eventually, I found a pain doctor who was able to get me off the opioids and other drugs. Thankfully I got my mind back. I could read again. More importantly I could write! Yay!

Unfortunately, it also meant I was back to living with the excruciating pain. Nothing had really changed, except that I had my mind back. Now of course, I have arthritis increasing my pain. The joys of aging.

In any event, after nearly twenty years of living with me in constant pain, my husband finally had enough and walked away from it. He was the perpetual “Fixer” in our lives, and apparently I was the one thing he could not fix. He said couldn’t handle watching me deal with my pain while not being able to do anything to help. He said he blamed himself because he just wasn’t good at being a caregiver. He also blamed me for not wanting to get better. He figured he only had a few more years to live and just couldn’t see spending them with me. He felt he deserved some to have some happiness in his life again.

So he left me to move in with another woman with whom he felt he could once more have a fun life.

So after over forty years as part of a couple, I am alone again.

At my age, dating is not an easy thing, even with a healthy body. Most men in their sixties are like my ex, looking for playmates. They want younger, fitter women, who enjoy sports and travel and partying. They’re not interested in someone who isn’t physically perfect. It’s truly depressing how cliché this attitude is among older men.

Unfortunately, the specter of Fibromyalgia, chronic fatigue, depression, and the host of other ailments controlling my life make it hard for me to even think about dating. After all, anyone who enters my life has to take on the Fibro Monster and allow his own life to be limited by it. The resulting depression over this conundrum nixes any desire I have to find someone to help me feel not quite so alone.

The fact is, I don’t want to put any other man in the same situation that drove my ex away. I don’t think I could go through another breakup like this one. My self image is tarnished enough for one lifetime.

I began to ask myself if it was even fair to try to develop friendships when this disease makes it hard for me to do anything from one minute to the next. I can’t plan on anything. My body won’t let me guarantee that I will “be there” or be able to “do that” at any given time. I know it gets old for everyone who knows me. It gets old for me as well, but I don’t have the luxury of being able to walk away from it.

So I am coming to accept the reality that I am always going to be alone. For the rest of my life. Not a fun thing to come to grips with, especially for a romantic soul like me. The future I see for myself stretches off into the distance like a bleak, gray road I have to travel alone. It’s a depressing thought, but it is what it is. There’s no magical miracle cure waiting for me just around the bend.

However, reading On ‘Going Away’ actually made me laugh about the situation a little bit. I secretly commiserated with an introverted thirty-something who was also struggling with being alone. I understood her pain and the irony she has found in her own experience.

It made me feel not quite so alone — for a little while anyway.