#lupuslife

I know many of us can relate to feeling like a burden and even those dear get tired of being around chronically-ill people such us ourselves.

And then when I was 11 I was diagnosed with a chronic illness. Taking steroids and infusion medication which made me gain more weight. So there’s just something about being curvy, black, and chronically ill that as I get older now at 20 I wonder if I’ll ever get over that. I love fashion, buying clothes and actually wearing things that fit me. And seeing all these beautiful girls and they’re amazing outfits on social media really makes me happy. But every now and then I’m reminded by how lonely I am. Because even just at 20 it seems everyone around me is dating and or married. It has had some kind of relationship or situationship.

So I’m just saying all of that to say that I’m better than I was. I’m comfortable in my skin and I love my style. But some days I’m reminded of how lonely I am. Even at work my coworkers talk so happily about they’re husbands and boyfriends and how easy it is to be happy. And it feels like a slap to the face every time.

How badly I want someone. Someone to make me smile and laugh. Someone I can be unashamed with. Someone who brings me any flower even wild flowers because they know I just love flowers. Someone I can make lunch for and surprise on my days off. Someone who will surprise me with the best place to watch the stars because they know every time I get home late enough I take a moment to look at the night sky. Someone that will hold me when we argue to remind me that he doesn’t hate me. That it’s okay because I know it’ll never be perfect.

I just really feel like I got the bitter end of the deal sometimes. And now I have to start infusions again and who’s going to want to spend the rest of there life with a constantly sick girl. If they didn’t try to get close to me before they definitely won’t now.

I am very much learning myself about lupus, and keen to help others understand it as much as myself.

When i see other people’s stories and blogs it’s really comforting to know it’s not all in my head.

I’m sure to some I look too well, and can do too much to be ill. I’d be lying if I haven’t thought that of others myself at times. I’ve passed comment that now I see could be hurtful, and lack understanding or empathy.

Who would have thought telling someone they look well could be upsetting? But it is at times.

Gone are the days of blusher… I spend time now covering the ‘natural glow’. No need for sun bed either… the high bilirubin in my bloods gives me a more tanned appearance.

The weight loss initially felt great… but I rather I didn’t need to buy new bras!

As for doing too much… yes 👍 I am, I’ve always feared laziness and not making my time productive.

I take advantage of when my head is clear to do what I can- and that is seen, what less people see is the grumpiness, the mood swings, the napping, and the recovery or even prep to achieve those days. Ask the suffering other half he bares the brunt of it. But I too have questioned others in the past myself that have met friends for nights out whilst off sick - to me sick was in bed not able to get out- oh how you fall.

The truth behind it all is that - no one asks for an illness they can’t control. & no one wants to be a warrior all the time. no one wants the constant “compliment” that you are strong, because you made it through yet ANOTHER trauma. no one wants to be afraid to live because you’re waiting for the next “trial/flare” to happen. No one askes for this.