6 Things I’ve Learned Living With Lupus

1. Realize your privileges, and take advantage of them

I’ve never been an “outdoorsy” girl. I preferred the comfort of couches and air conditioning to the outside. But now that my heat sensitivity and photosensitivity can spike my fever within 5 minutes and I’ve been advised to stay indoors from 10am to 4pm, all I want is to breathe fresh air and feel the sun on my skin. I have the strangest yearning to go hang out at the park. I cry regularly because I want to visit the beach. I’ve never been into sports or exercising, but now that my lungs are becoming more inflamed I have a new desire to run a 5K.

I had no idea what an amazing gift I had of the entire world at my feet. I’m not counting myself out yet for travel and exploration, but I wish I had known how much I would wish that I had gotten up and walked outside back when I could whenever I wanted.

2. Delaying or detouring goals is not the same as giving up

I’ve always been an all-or-nothing kind of person. That goes for nearly everything in my life, but especially school and career. In school, if I’m not going full throttle, then I may as well just quit, because what’s the point? I’m still finishing my bachelor’s at age 27, and I feel that “what’s the point?” feeling quite a bit.

Once on Pinterest, in the midst of a bunch of other cheesy cliches in the Inspirational Quotes section, I saw a pin that said “Last place is better than didn’t finish, which still beats never started.” I know there are people that will disagree with that sentiment, but it really stuck with me. I still haven’t given up, I’ve just slowed down. That doesn’t mean I won’t make it to the finish line eventually. And between the girl who finishes without a care, the girl who gives up when the going gets tough, or the girl who perseveres through the temporary struggle because she is that passionate…who would you want to hire? (A side note: can our society please stop focusing on “Oh my God, I’m so old…” We’re not old. 27 is not old. And I’m personally done with anything past 22 being “so old” and obsolete. Bad enough that we treat seniors the way we do, now it’s trickled down to the late 20s?)

3. Knowing someone will never leave doesn’t mean you can treat them like they won’t

I have been blessed with the most amazing, understanding, kind boyfriend. Even before my Lupus diagnosis, we’ve been through a lot together. At this point, though I can’t say with 100% certainty of course, it’s highly doubtful he’ll ever leave.

But that doesn’t mean I can treat him like he won’t. I can know with all my heart he’ll stand by me forever, but as soon as I treat him like he will, it’s likely I’ll be proven wrong. I am so grateful and thankful for him every day, but that’s not enough. I need to tell him, to show him. Thinking that I can demand whatever I want and treat him however I want just because he can take it not only will make me lose him, it means I don’t even come close to deserving him.

I’ve worked even harder to do things for myself than before, just so I know I won’t be taking him for granted.

4. Physical Intimacy is a blessing

I’m not even talking about sex here, that is a rarity right now. I mean the smallest of things: long kisses, tickle fights, spooning at night. When you’re sick, all of these things can be harder, just because of the lack of stamina and energy. I miss kissing him so much when my lungs are out.

When I get a chance to, I take it, even if I have to sit down for a second after (though when that happens he likes to joke about how he can take my breath away). We miss each others affection so much, and even though shoulder rubs and holding hands can compensate, we both know we’re only pretending that they do.

5. Someone having it worse doesn’t make your pain any easier, but your struggle doesn’t make someone else’s pain irrelevant

This is a bad habit I’ve always had. I would feel almost a sense of anger when people came to me with problems that seemed insignificant, as if they didn’t have the right to think that their legitimate struggles were important. “Seriously?” I’d think. “THAT’S what you think is a big deal?

Conversely, I used to be ashamed to think that my struggles were actual problems. Even after my diagnosis, I felt bad complaining about what I had to go through. Comparing my Lupus to a friend’s bone cancer that caused her to lose a leg just made me feel like a shitty person. Either way, comparing struggles is futile and stupid. Not only does every person have a different “struggle scale”, but my friend’s cancer has nothing to do with my Lupus. And my Lupus has nothing to do with my friend’s anxiety. Better or worse can’t even be applied to this. More importantly, focus on your own struggle. If it’s bad enough to be called a struggle, it’s doubtful your attention needs to be elsewhere anyway.

6. Small victories are still victories

So many times we beat ourselves up for not doing more, not having enough accomplishments, not being…enough. This ties in with #1 and #5, but we all need to stop every once in a while and realize how much we all have truly accomplished. Maybe you see someone who seems to have it all and do it all. That doesn’t mean that the fact that you went into work every single day this week, even while feeling like crap, is irrelevant. Someone running a marathon doesn’t mean your decision to walk 20 minutes every day isn’t important. Some days my biggest accomplishment is unloading the dishwasher, or putting on real clothes. And I’m proud of these accomplishments. While some people might think they don’t matter, they are a badge of honor for me.