We’re just a couple of 20 something’s, remodeling our first home together, figuring out home ownership, or as our parents kindly refer to it as “playing house”. As far as we’re concerned, life is a perpetual sleepover with my best friend and our #1 priority is providing Bear his best life and a yard to play in.
After catching up with a migraine friend over the weekend, she shared an incredibly sweet sentiment about how inspiring it is to see “one of us”, a chronically sick person, in a loving, respectful and understanding relationship. That it offers her hope. It is never lost on me how lucky I am to have Paul as my partner, caregiver, roomie, best friend and boyfriend. I definitely don’t share our love in effort to put others down or rub in our happiness, I haven’t thought of it from that perspective and I wanted to share a little insight for my followers.
I reassured her that we also have our own issues and that while the happiness we share on social media is authentic, it’s not the whole picture. I reminded her that while I am beaming with pride to see Paul excel in his career and grow professionally that it stings that I’m not able to contribute in that same way. That I often am right where he left me when he gets home from his big work week. It makes me feel worthless and it’s hard when I can’t keep up with “the norm” of what people my age do, or general societal expectations. I am blessed beyond measure to have the understanding and support of my partner who encourages me to always put my health first and to follow my passions over a paycheck, not because were rich, but because he values my happiness more. I want to point out that I’m in a relationship with someone who treats me with love and respect because I demand it. I treat myself and others with love, kindness and respect and I know my worth even when chronic pain and invisible illness make me feel worthless. I hold myself to a standard and I don’t accept treatment that is lesser than in return. It’s easy for the care giver dynamic to become one sided, so I am mindful to support Paul in return to the fullest of my abilities and we both forgive one another’s shortcomings and work to communicate our needs. Paul is unique in that he understands when I am sick and debilitated but also knows when and how to motivate, encourage and support me to push beyond my precised limitations. We’re far from perfect but we still find a lot of happiness in the middle of life and love with invisible illness and chronic pain.
I see a lot of people in the chronic pain community struggle with “love” and relationships, for obvious reasons. Pain conditions definitely take their toll on relationships, but in a lot of ways my health journey has strengthened our love. There were a lot of times I would’ve understood if Paul wanted to go his separate way but time and time again he proved that he wasn’t going anywhere and I even noticed he began referring to my pain or migraine as “our migraine” or “our disease”. I credit my health for strengthening our communication, focusing us on what is important in life and ultimately preparing us for the trials and tribulations that life undoubtedly has in store.
I first heard “Radio” by Lana Del Rey, while driving home from my first time meeting Paul’s family in KC, when we were in college and it’s truly become part of the soundtrack to our relationship- plus I fkn love Lana and still not over her canceling her KC show last January.
“I don’t even notice how hard life was, I don’t even think about it now because, I finally found you.
Now my life is sweet like cinnamon, like a fucking dream I’m living in”