u/datboitata

I’m a 26-year-old girl. For a few years, I have been experiencing a variety of symptoms: exhausted 24/7 regardless of sleep, bad brain fog, memory issues, deep aching pain in my knees/hips/legs/sometimes all over, sensitivity to sunlight, eczema, sudden nausea/dizziness, headaches, hair loss, stomach issues, mouth/nose ulcers, getting sick constantly, getting sick immediately after pain flare ups, etc. It started out with just a few, more “minor” symptoms, but more things started popping up and everything became more severe over time. I thought maybe I just didn’t eat well enough or didn’t work out enough. I tried to express some of the struggles to my parents, but they’d just tell me I was lazy and dramatic over and over again—so much so that I started to believe them and just stopped talking about it. I came to a point where I accepted that this is just normal, that all early/mid 20 year old women feel like this. I had no idea that most people do not feel the things I do or struggle the way I do on a day-to-day basis.

I started working at a retina specialist almost two years ago. Around the same time, I started seeing a new therapist. Late last year, I started sharing with her some of the physical struggles I’d been facing. I thought that maybe all the symptoms were physical manifestations of stress, and maybe she could help. She immediately thought it was auto-immune related. She thought I’d been so chronically stressed that I may have “lowered the threshold for the disease to activate.” Whatever that means. I decided to speak with one of the doctors at my workplace about it since he was like a dad to me; he asked me a lot of questions about symptoms/other things and then instantaneously referred me to a rheumatologist. Fast forward a couple visits, many questions, lots of bloodwork, x-rays, etc…they diagnosed me with Lupus and put me on about 315mg of Hydroxychloroquine to start. 200mg pills, but he wants me to take 2 pills on even days and 1 pill on odd days. Some steroid cream too for the mouth ulcers. Good thing I work at a retina specialist so I can always check myself for plaquenil toxicity, lmao.

Upon getting the diagnosis and treatment, I felt a little relieved to just know what is going on and have a treatment plan, and to know that I wasn’t just lazy, dramatic, or sensitive. But I felt really upset too, and still very lost or in the dark. I’d never pictured myself being pinned for some chronic illness, it’s just not something I’ve ever thought about and it felt weird and daunting. I don’t even know how to describe it. The doctor supposed it was still “early stage” based on bloodwork and all, and I know I’m being treated which is great, but what does all of this really mean? Am I going to be “fine”? Or am I inevitably going to end up with heart/kidney disease or some other terrible long term damage? I have no idea what to expect. Any answers I get from the internet are all over the place and just not reliable. Do I need to make lifestyle changes to help myself? Do I need to go on a specific diet? Are things going to get better or will they just continue to slowly get worse? Literally what the fuck do I even do from here

Edit: Thank you everyone for all of your kind words and advice. I came here a little scared and just ranting everything off my chest, but I already feel a little better about things. Everyone is beyond welcoming and helpful here, and I am forever grateful for that. Sending all my love and good vibes to you all <3