The worst part of chronic illness/pain

The worst part of my chronic illness isn’t the pain, feeling shitty, or the endless meds and doctors appointments… it’s the bone crippling loneliness. The world is going at a hundred miles per hour around me while I sit still. Friends go on and grow while I sit stagnant. 

I have no consistent social life since I can’t work. I can barely commit to anything because I won’t know how I will feel and I don’t want to let people down by canceling. I could go days with out interacting and that is so fucking depressing.   

This lack of interaction creates a couple of emotions… 

1. Insecurity: You see everyone out doing fun things or growing in their careers… yet you can’t participate.  You start telling yourself horrible things about why people don’t want to hang around you.  You’re not able to keep up with people and rarely are people willing to slow down for you.   You quickly start believing your worthless.  

2. neediness: you start CRAVING connection. It’s like your body and brain go through withdrawal. You start pestering friends… pestering to the point they hate you and leave you. They have jobs and have no idea why you could be so lonely. Don’t get me started on how you’ll feel about canceled plans… you won’t have your normal reaction of “thank God I can just stay home and rest”. Instead it’s “I’ve been looking forward to this social interaction all week… it was the highlight of my week!”. You will feel disappointment like you’ve never felt before… because your brain has turned into a needy bitch. 

3. absolute loneliness: you are left with your pain and illness as your only constant. Your brain starts playing tricks on you. You start to realize you’re not a part of society any longer. The world has moved on with out you. It doesn’t need you any more.  

4. crippling depression: Your world has come crashing down. Your brain just can’t function normally. You become this hyper emotional creature from the depth of hell that is a dark shadow upon the light of the world. Being on huge doses of pain meds doesn’t help either. You unlovable at times.  

Expect friends to leave you. This was the hardest part for me. Friends can’t understand what you’re going through. They have their own lives… their own struggles. One by one they will leave you. That’s okay. They have lives too. You can’t expect them to move at your speed. My own husband couldn’t handle it. If a spouse can’t handle it how can you expect a friend to handle it.  

The emotional aspects of having a chronic illness or chronic pain are worse than the physical aspects. I long to work in an office or group again just so I can have a social outlet and feel productive. I’m thankful for the couple of friends who can handle my crazy when it kicks up. I’m thankful for those who haven’t turned their back on me. I’m thankful for those who remember “hey Elizabeth might want to join me/us”. These are the people who will get me through.  

Waiting to die…

Some days… like today… I can feel his breath on my neck because he’s so close. I can feel his presence in my every task as he waits. He waits for the inevitable. He waits to do his job of taking my soul from this world. The reaper is my only constant companion these days. Death is my only commitment.  

Some days I talk to him. I tell him I’m ready. I’m ready for the pain to end. I’m ready to go to my final destination. I can feel the inevitability of it all. Some days I’m at peace with it all. Some days… 

Most days I hold on with every ounce of life and yell at him that I’m not ready… that I never will be. I still have days where I feel alive and I cling to those days. Those are the days where my mind and body decide to work. 

I know my time will come… I can feel that it’s probably soon. I spend my days cherishing moments… I focus on trying to reconnect with people. I hate being alone… it reminds me that I will die alone.  
I’m afraid… I’m afraid of what happens next. I pray for it to come quickly and just end the never ending pain and emotional struggle. Yet I am afraid of dying.  

I pray I’ve touched a life or two. I pray I’ve helped the world in some way. I pray I’m not forgotten… I mean I’m forgettable even alive so I don’t imagine my legacy will go far. So I wait… I wait for death to take my pain away.   

I am what I am

It’s June… its gay pride month. To me that means a month of being a bit extra out and proud as I celebrate with my LGBT community. It’s a time when we come together for festivals and parades. Its a time where we can have fun and forget we are an oppressed minority that faces prejudice on a daily basis and even jail time or death in other parts of the world. It’s a time where many of us reflect on our lives.  

I figure for the first time ever I would write my story down. Perhaps it will help one fellow human be more comfortable in their struggle. Maybe it will help my friends, family and cohorts understand me a bit better. Or maybe no one will read it but I will feel better for getting it out. Who the hell knows.  

I knew I was different starting in about 4th grade. The other little girls in class were always talking about the boys… sending them cute notes, trying to get their attention, etc. I had no interest. No interest in any of it. I didn’t get what the big deal was. I dove into my own world due to the insecurity and discomfort. 

In 6th grade hormones started raging. Like absolutely raging. The girls were all dating and acting weird around the boys. I still felt nothing. I had a “boyfriend”… a sweet upright bass player from our school chamber orchestra… but it was confusing to me. It didn’t feel like anything. I literally had no feelings for this guy who was pouring his heart out to me on a daily basis. I just kind of stopped talking to him.  

It was 7th grade when I felt arousal at the sight of someone. I had no idea what the feeling was at the time but looking back it was definitely arousal. It was in gym class… I don’t remember her name… but I remember what she looked like. She had great boobs… like woman boobs… and her butt was perfection. I sat on the bleachers watching her play volleyball. Honestly at the time I had no idea what was happening in my mind or body. All I could do was stare. The other kids knew I was “different” and they harassed me daily and physically assaulted me frequently. 

For the next few years I struggled with myself. I knew the feelings I was having weren’t normal. I was scared. I lived in South Carolina… it wasn’t exactly a welcoming place for a girl trying to figure out what was going on sexually. I told no one. Not even my therapist. I didn’t even have a word for how I felt. I just knew no one else had these feelings.  

The summer after 9th grade I went to California for a while to visit my aunt and uncle. While I was there they took me to LA pride in West Hollywood. Well… I found the word I needed to describe my feelings. It hit me. I was gay. I was gay and there were others like me. It was an awakening. I felt like a weight had been lifted.  

I went the next few years being out to friends. Eventually I came out to my family. I figured they had all figured it out. For the most part they handled it well.  

Not everyone I meet is okay with it. When I was 20 I was sexually assaulted by a guy who thought I just needed a strong man to change me. It was horrible. He was a friend of a friend. I still have nightmares. He most definitely did not turn me straight. 
I prayed and wished to be straight… to be normal. I struggled many years of my life with who I am and feeling inferior and substandard.   It wasn’t until about age 30 that I became comfortable with my sexuality.  I no longer feel inferior.  This is who I am.  This is who God made me to be. 

I faced violent threats, disgust, prejudice, stereo types, hate speech, and teasing through out most of my life just because I am different. 4 years ago I decided to try dating men again. I faced anger from many of my lesbian friends for “choosing” to be bisexual. I wasn’t choosing anything. It was sad. My own people were turning on me for deciding to explore my bisexuality (I’m like 90% lesbian but wanted to at least try a relationship with a man)

As an out bisexual I get a lot of “just choose a side”. Sexual preference is not a choice. I didn’t learn to be attracted to women. I didn’t choose to feel this way. I’m not broken… homosexuality is not a disease. There’s no therapy to “cure it”. Our brains just work differently. When it comes to sexuality there is no “normal”… but that’s a whole different blog post.  

I’m glad young people discovering themselves these days don’t face near the prejudice, discrimination, or violence I did. It still happens but thankfully most of society in America is accepting now. What went through made me more determined to be out and open. I refuse to let anything shut me up. I am me. I am living my best life. I am true to myself.