5 Things My Boyfriend Has Had to Get Used to Since Dating a Spoonie

As much as there is so much to talk about regarding dating while battling a chronic illness, I want to focus for a moment on what my long-term boyfriend has had to get used to dating a spoonie.

Getting to the Rare Disease or Chronic Illness Portion of the Date

While my opener when first getting to know someone doesn’t tend to be “I got Lyme Disease but wasn’t diagnosed for over a decade so things got worse and now I have some weird permanent conditions that affect my everyday life…” we got there within the first few dates when I could no longer hide certain symptoms. I wanted him to get to know me before I say “Okay here’s what’s up, I feel bad for the inconvenience is causes my loved ones, but it definitely sucks for me too.”

Thankfully, he’s been more than supportive and understanding. He’s curious and does whatever he can to make sure I what I need when we travel, hang out, eat, go to parties, exercise, etc. I am really grateful for it, because believe it or not, not everyone is accommodating and some are just super annoyed by my conditions. The latter sounds ridiculous, but unfortunately empathy isn’t always the innate response.

Weird Stuff My Significant Other Has Had to Get Used to Regarding My Chronic Illness

After two years of questions, new experiences and flares, traveling and fatigue, and just day-to-day living, he’s gotten accustomed to my symptoms and accommodations so it’s not a part of his everyday life. And while I definitely don’t think it’s okay for anyone to have to get used to their chronic illness, and that we should always fight for better treatment, cures and outcomes, for now, there are just some realities I have had to adapted to… and so has he!

Below are just a few of the weird stuff he’s had to get accustomed to in dating someone with Lyme, POTS, EDS, and brachioradial pruritis.

1- Black Outs. It’s gone from, “OMG what’s happening?” to “You having a black out?”

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2- Extreme Fatigue. He’s pretty energetic and active and whenever I needed a break, he was confused and just thought I didn’t want to do those things, even though for me, it was just an energy depletion thing. Now we go camping and hiking frequently, but after a few hours of activity, I generally need a rest. So I’ll go lay down while he goes to fish. We have a pretty good system going and now he understands it’s a spoonie thing, and not necessarily an issue of what I don’t want to do.

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3- Random Fevers. For no real reason, I get low grade fevers a few nights per month. It’s confusing and disorienting. At first he thought I always had the flu, but now he knows it’s just happens sometimes.

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4- Freakishly Weird Body Temperature Change. Generally, I am freezing during the day and a furnace at night. So, my thermostat typically reflects that. But hey, sometimes it’s not that way. I pretty much have zero control over what my body decides. But, he’s gotten used to sleeping in 65 degrees at night!

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5- Dairy Free, Gluten Free, Nutrient-Rich, Whole Foods Diet. This is super high maintenance for the average American. It means cutting out some of the simplest conveniences like cereal, bread that isn’t homemade and gluten-free, and anything that isn’t a whole food. I stray from this occasionally, especially if my health is really good, and do my best to go out to eat sometimes because it’s fun. But now he keeps in mind the way food affects me, like gluten and dairy causing horrible cramps. He’s not as shocked when symptoms occur if I do stray from my regular diet.

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While it’s not okay that we have to adapt to some weird chronic illness symptoms, it’s the reality many people face. I am grateful that my typical symptoms aren’t that bad right now, and that I can generally adapt my lifestyle to keep the severe ones in check. But I’m also thankful that my significant other has also grown to understand that these little inconveniences aren’t that bad in the grand scheme of things, and if anything, I wish we both didn’t have to deal with them!


Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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