Chronically Writing - The Lonely Days

It's always said that it's lonely at the top of the mountain. It's the same with chronic illness. Our world becomes our illness because each day depends on how you feel. While I cannot fall back on that as much as others (because I have nobody else except my husband and he too is disabled), this #ChronicallyWriting will tell you how tough that part is...and how hope sometimes comes unexpectedly.

These days, with the unpredictability of my illnesses, I like staying close to home. I go out shopping and to appointments and walk the dog, of course. But what takes time and a few minutes for one person is endless thinking and torture for me. It's a little more complicated than you think.

My husband has a blue collar job. He comes home tired and tries his best to rest and be a husband and father. But he is also disabled from several past incidents, some of them out of his control. He needs help from me in more ways than a normal person would do.

We also have nobody to help watch our son. My siblings do not live in the state, and my mother made it clear what her boundaries are (her place, her time, her convenience). My in-laws also chimed in that they lived "too far away" and generally wanted us to visit with Calvin, which we stopped doing regularly in 2022. My brothers- and sisters-in-law either never cared, never answered, live out of the way and/or fed us scraps.

Most of our friends are scattered around the country and the world. And most of them are in the same boat we are: low income, homeless and worse. That is the problem with trauma, though. A lot of us find each other. Because many of us are in the same boat, we tend to keep swimming in the same circles, unsure as to why we are getting so dizzy.

Until someone finds their way out and swims away.

Doing this, we also lost touch with many people, friends, associates and relations alike. It felt very isolating, local community included. Where once I thought to find help, there were closed doors, discrimination and emails of "Who are you?" after countless clear messages back and forth.

In those years, I struggled with who I am and what was happening to my body, and cried myself to a migraine many times more. I was also trying to deduce if I was neurodivergent at the time, and the masking and unmasking was so confusing that I was completely frustrated with myself. It was the same struggle most women faced, and I was tired of the same answers. I fought back worse when they came - it's not so bad, you're childish, too much trauma, have some CBT. It even came from the same mouths that claimed to cherish me and be looking out for me.

In case you did not know, CBT is cognitive behavioral therapy. Something I had already worked out with my therapist ages ago and something she does not want me going through again. The suggestion that I was faking it, or it was all in my head, was appalling, disgusting and utterly devastating to me. My extreme reaction seemed to give any doctor justification to the diagnosis too, and they tried forcing me into their program. I refused and moved on to another provider.

As I waited for answers, I had some bad days.

Really, really bad days.

Days where I saw the world as unforgiving and cold. Days where nothing I did was right and everything went wrong. Days where nobody was listening to me, nobody believed me, and nobody wanted to take me seriously.

After several betrayals, especially after someone that was so special to me, it was hard to reach out for help. PTSD from medical appointments (and even from constant rejection) is a real thing, and those with chronic illness will understand. I lashed out a lot. I cancelled appointments out of anxiety over the same responses: "Your lab results are fine, there is nothing wrong with you."

And the loneliness again wrapped itself around me.

I drew solace in what I had - my home and family. The more I embraced it, the more I realized how much I wanted my home to reflect calm and peace. I wanted to be the parent that any child of mine could find safety in. That meant that I had to work on me. Some of it I could control. Others, I could not, and I had to hash it out with my husband.

I am still hesitant on communities. A friend of mine invited me to a state hypermobility group on Facebook and many understand what I am going through. I have a cousin with fibro and we talk about it sometimes. Some out-of-state friends (as I see them) are autistic like me and we talk about it. A recently-disabled neighbor offered me rides to the store so that I did not need to take the bus and pull my wagon of groceries.

Suddenly, life was no longer lonely.

But I am sure as hell cautious still. Trauma makes me wary of the outside world. Even years of trust have ended in a broken friendship. People change, sometimes not in the ways you believe. A perspective on a memory means something else to another, and resentment festers.

In the end, though, I still understood.

Light and love, everyone. Namaste!

#ChronicallyWriting #ChronicIllness #LonelyDays #TheLosses #CTAuthor #WifeAndMom #IndieAuthor