I recently met someone new, Wesley. We chatted for a few weeks after meeting online (Thanks Tinder!). While we were talking I mentioned the reason my last relationship ended was that I wasn’t getting enough attention. That makes me sound needy but in reality I was getting a text message every 3-4 days and I had seen him once, for 10 minutes, in 6 months. I needed more.
Wesley asked what I needed from him in a relationships besides the basics like love, affection, and attention. At first I was thinking, ” That’s all I really need.” and I told him this. After a bit more thought I turned to him and said, “I need you to understand I’m sick.”
Wesley told me he understood that. I thought, he KNOWS I’m sick, but does he UNDERSTAND what exactly that means. Does he understand that I’ll cancel plans because I can’t get out of bed, or I may push myself to do something really important to us but I’ll feel like hell afterwards? Does he understand that I’m constantly at the doctor’s office? Does he understand that I take a lot of pills and when I say I’m in pain ibuprofen won’t help? Does he understand he’ll spend a night in the ER with me every once in a while? Does he understand how scary it is to see your partner have a seizure? Does he understand how heartbreaking it is to see someone you love in so much pain they can do nothing but lay there and cry? Does he truly understand what it is to love a sick person?
I expressed this all to him, between tears, afraid he would stop wanting to see me. He took my hand and said “I don’t truly understand but I’ll try the best I can.” I had a seizure that night and he handled it remarkably well. I was impressed and very flattered that he was making the effort to do this for me, truly trying to love me, health issues and all.
After an amazing weekend and a remarkable Valentine’s Day with a person I’m sure I can love and who will come to love me back, I did some reflecting once I was alone. I then pulled up the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) on my phone and sent him the link with the message, “I want you to read this. It perfectly explains what my life is like.”
After reading the article he replied to me, “Wow, that’s definitely an eye opener.” I smiled when I read that and told him, “Yeah. I know. It was important to me that you know that. I can tell you I’m low on spoons now and you’ll understand.” He said he would need to read it a few more times to fully understand it. Speaking with him a few nights later he told me he’d read it again and is understanding it more.
To hear that he is trying to take the time to truly understand what it’s like to be me is something I’ve wanted for years. I just hope that he doesn’t run screaming in the other direction like so many people do when they actually experience life with a sick partner. Many people think they are prepared for that kind of stress but very few actually handle it the way they think they will.
By virtue, we are high maintenance even though many people would look at us and call us the opposite. We often don’t have the energy to pull ourselves together the way people associate with high maintenance people. The high maintenance isn’t vanity, it’s necessity. It isn’t getting up early to pick out the most fashionable outfit, it’s finding an outfit that we can a) put on without exacerbating our pain and b) that is comfortable enough for all day wear. It isn’t getting up early to do our hair it’s getting up early to take the time to wash and comb it, forget about drying it. It’s not about picking out the most stylish shoes, it’s picking out shoes we can wear with comfort. It’s not deciding which bag to use, it’s what braces to wear and what meds we need. It’s not being able to skip breakfast because we’re running late. It becomes a choice between being late and taking our meds. We’re high maintenance because that’s what we need to do to survive.
To all the healthy people out there with sick partners: We appreciate everything you do for us, even if we don’t show it. It takes a strong person to stick by us and it’s not for the faint of heart. We truly are eternally greatful.
Love & Spoons,