So You Just Got a Lupus Diagnosis: Here’s A REAL Q&A

When 21st century humans get a medical diagnosis, we take to the Internet for answers and find the same 2 results in Google.

  • Result 1: A Wellness.whatever site that gives us cold hard facts and no answers we secretly want.
  • Result 2: Forums filled with dedicated, kind and mildly insane people who are WAY too into whatever is wrong with them.

Well, if you have Lupus, I offer you Result 3: An honest Lupus Q&A from a 15-yr Lupus patient with no medical degrees. Intrigued? Good. Let’s get right to it.

Q: Am I going to die from this?
A: No. Highly unlikely.

People used to die from Lupus complications in the 50s and 60s, like Flannery O’Connor. And things weren’t great in the 70s or 80s either, but now, you’re in pretty good shape. It’s a fine time to have “The Lupus,” all things considered.

Q: Am I disabled now?
A: Doubtful, unless you’ve got a bunch of other stuff going on.

Everybody has a different degree of Lupus. Some have it layered with other things (see forums) and it seems to really take those folks down a notch. Others get it under control and live normal seeming lives without any noticeable problems.  Which can be annoying because you don’t always feel great, but you look fine, so no sympathy for you.

Q: Will I be able to keep working?
A: Adjustments may be needed. Depends what you do for living.

Can you keep working at the docks loading barrels onto a boat or be a 75 hour a week law partner?  Maybe not.  But you’ll be able to work if you want to. I mean, blind people and quadriplegics work, so, you know . . . figure it out. Or, if you’d rather not work, then don’t. This is a fine excuse, right here.

Q: Is my hair going to fall out?
A: No. Not like if you had chemo.

But like chemo the hair falls out because of the drugs more so than the Lupus itself. The more serious your case, the more hard hitting your drugs and then… cue hair drama. But I will tell you, even if you’ve got it mild, your hair and skin will change and not for the better. It might thin out randomly, skin might get rashy and blotchy. Hormones might suddenly mess with your system more. Most likely, one day, you’ll be styling your hair like normal and notice a bit more scalp or you’ll be showering and pulling out more hair with the conditioner. I won’t lie. This part of Lupus SUCKS.

Q: Am I going to get fat or thin?
A: This one is really on you.

You’re going to get stressed.  So how do you respond to that?  With starving or pie eating?  Plus, you’re going to be tired and achey and maybe the joints will swell when you flare so you’re not exercising like before. And if you keep eating and sitting around. Well . . . calories in and out, you know?

Again, though, it can also be about the meds. Prednisone is notorious for puffy face, water retention and weight gain.  Boo.  Prednisone, in my opinion is the devil incarnate. And not because you bloat.  It makes you feel fucking fantastic, but you can’t stay on it and coming off of it is a nightmare. If you ask Doctor Rocky*, she’d say avoid that shit at all costs.

Q: Can I keep running, walking, jazzercising, cycling, etc.?
A: Oh, so you’re the active type?  Yeah. You’ll be fine unless you’re all flaring up.

You’ll also have to regulate that “push through the pain” mentality that exercise nuts love because your pain is not just psychological.  So, yeah, you can keep being you, but you might have to slow down a little. Kind of a similar answer to the working question. Carry on, but understand that adjustments might be needed.

Q: I just got diagnosed and feel like shit. Is this my new life?
A: Breathe. You’re having what they call “a flare,” and most people get diagnosed during flares and then get these under control and reach a baseline that is not complete “shit.”

However, your new baseline is not your pre-Lupus baseline. Sorry. You have a chronic condition now and you’re going to have to readjust your expectations. There will be a new normal. It’s a shit sandwich, and it takes some time to get used to this new reality. You’re going to feel pissed off and entitled for a while. Why me? What the hell? This is bullshit!  But the sooner you accept your new normal, the sooner you can get on with life.

Q: Why isn’t my doctor helping me, listening to me, fixing this, taking my symptoms seriously, etc.?
A: You have a chronic and somewhat elusive and serious health condition now. There could be several things going on.

  • Your doctor isn’t a specialist.  If this is the case, get a referral to a rheumatologist or other specialist.
  • Your doctor is an asshole. This happens too. They’ll tell you to control your stress and pat you on the head. They have terrible bedside manner and they’re “by the book” old school traditionalists. This tends to be an older male thing. Move on. Find a new doctor.
  • Your doctor actually can’t help. You’ll quickly learn that “achey, foggy brained, mouth ulcers, sore feet, headaches, weight gain and exhaustion” are not areas of concern for your doctor.  She’s sorry, she really is, but she’s here more so to make sure you don’t have kidney complications.

Don’t confuse your new baseline health reality with curable symptoms. Sucks, right? Sorry.

Q: Are these Lupus drugs as scary as they sound online?
A: Yes and no. A lot of them are like firing a cannon ball at a dog house.

They’re just now starting to get some new drugs on the scene. Some docs like to hit Lupus hard out of the gate to get you into remission, especially if you’ve got serious issues brewing beneath. Others ease you in with plaquenil and try to tame the beast slowly with milder stuff. Take an active role in researching your diagnosis and treatment options. Don’t just blindly do whatever the doctor says. And don’t believe all this shit you read online either.

Q: Why don’t people believe or care that I’m sick?
A: When you first get something dreadful, folks care. If it’s chronic (and invisible), however, you’ll soon find that very few people can hold a high level of concern for very long.  

This is part of the psychological burden of having a chronic illness and a new baseline of “well” being. Have compassion and kindness with yourself and try and forgive others who can’t keep that sympathy train rolling. Husbands, parents, children, may all be there for the diagnosis, picking up slack and meds and listening to stories of exhaustion and grief.  But 6 months on they’ll have moved on and you’ll still have Lupus. I’m sorry. This sucks. This is also when you can go hang out on forums and go to support groups if you need more support.  Or you can nod your head in resignation and forgive the messy world.

— Doctor Rocky*, Lupus patient, over and out.

*Doctor Rocky is not a real doctor. She’s a writer who likes giving advice.  If you take her advice, that’s solely your responsibility.

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