Note 1 ☕️
Wait, read the introduction at the “hello. start here” above before proceeding.
1.
The Toxic Boyfriend
I have lived with lupus for 18 years. Good, bad, or indifferent, lupus has lived with me too. Must be difficult for the disease to live in a body that fights back and has the will to persevere.
Lupus is like an unpredictable boyfriend. In my journey of love miracles and mishaps, it has a supporting role (though not quite supportive).
Frankly, I’m in a messy situationship. It’s cyclical, like the dude who simply won’t give up on annoying the heck out of you. Asking to see you at odd hours, demanding your attention, sliding into DMs after getting blocked. Just when you think life is smoothing out, here he comes again demanding your time and energy. He's toxic, but you can't shake him. He won't go away quietly.
I don't do messy unless I'm creating something. But this guy doesn't take the hint.
He's a squatter, renting without paying a dime. He's a taker, who makes you feel guilty for focusing on dreams and self-actualization. He should be featured in a Beyonce song. He makes a lot of noise, while saying nothing at all. He likes pain and discomfort, watching you intently as you say goodbye again and again. He doesn’t believe you.
When he comes around without an invitation, it takes time and effort to push him out of the way. Sometimes he won't go away without a double-edged sword of medication like a steroid or chemotherapy drug. Double toxicity. We’ll talk more about that later. Other times he sits quietly waiting to pounce again, hoping to create more chaos and loneliness, and isolation, and exhaustion.
Others cannot tell you're struggling, and while that may be a level of temporary emotional protection, it is also one of the reasons lupus is difficult to diagnose. The patient has to prove it. People assume if you're not in the hospital or sick and shut-in at home, that you must be ok.
We invest in the facade of “ok”, an imaginary land that does not exist.
Case in point:
How are you doing?
I'm ok. You?
I'm good, thanks.
(keep walking away).
When people look my way, they don’t see lupus. They see a bubbly woman who is easy to talk to. Similar to the way we literally can’t see heartbreak. There is an invisibility to pain and suffering. We like to show the highlight reel. But what happens when the highlights become fewer and fewer?
Many times we see and sense someone is hurting, but we don't want to pry or offend. We don't want to guess wrong. Most importantly, we don't want to be uncomfortable.
Asking to see you at odd hours, demanding your attention, sliding into DMs after getting blocked. Just when you think life is smoothing out, here he comes again demanding your time and energy.
This is our western culture – pleasure, impatience, and instant gratification. Undercover hedonism.
We don’t do well with invisibility, gray areas or abnormalities.
Lupus thrives in the grey area confounding everyone – including me.
Walking with lupus is a familiar toxicity and breaking up is the temporary win.
Sometimes that toxic boyfriend disappears for days, months, and even years.
Until one day...
Ding. Ding. Ding.
