“My doctor thinks I might have lupus.” It’s a statement I’ve heard many times from various family and friends over the last few years. And my first response is always, “was it your primary care doc or a rheumatologist?” If the answer is primary care, my next response is always, “don’t panic!” It’s a long road from thinking you may have lupus to being diagnosed.
If you find yourself in this club, here is a list of 11 things you can expect along this journey.
- They take a lot of blood. A LOT. And if certain markers are present in the first round of testing, or a lab value needs to be quickly confirmed, you’ll be coming back another day to give more blood. I’m lucky to live within walking distance (yeah, I still drive every time)–which is great. If you live in an area that lacks specialty care, you’ll be driving. A lot.
- You’re going to pee in a cup every time. Time your liquids well.
- What shows up in your blood work can automatically “include” you as someone with autoimmune disease (or disease potential). But even if your blood work turns up nothing, and you still feel a certain way, they’ll want to see you again, and they’ll help you uncover a cause. My bloodwork brought me into the club, but since then I’ve had mostly normal labs. A lot of my aches and pain stem from fibromyalgia, which doesn’t show up in bloodwork.
- The blood tests will make no sense (unless you’re a medical doctor). Be prepared for words like antiphospholipid antibodies, DsDNA, Lupus Anticoagulant, RA factor, ANA titer, ESR, Sed Rate…I could go on. Be sure your doctor explains your results well, and don’t be afraid to ask a lot of questions. If markers are showing up that indicate autoimmune illness, bring a friend with you. Having another person in the room as another set of ears is immeasurably helpful. This website helps.
- Sometimes your doctor will see a clear cut diagnosis in your test results. But it’s likely that they won’t. If your results show certain factors and lupus is suspected, keep in mind there is no single test to diagnose lupus. Your diagnosis will be based on a number of factors.
- If lupus is suspected, you’re going to feel like a guinea pig. You will work with your doctor to come up with a treatment plan. You’ll talk about medications, lifestyle adjustments, supplements, and support networks. You might get put on prednisone right away. But another big part in the beginning of this journey is getting referrals…
- You’re going to be referred to specialists. My doctor recommended I see a neurologist and cardiologist. I had a bunch of scans and learned I was claustrophobic seconds into being inserted into an MRI machine. I also did two sleep studies. Because Plaquenil is one of the first drugs they’ll try, I needed to see an eye doctor (although it’s well-tolerated, a small percentage of people have eye issues). Lupus is a systemic disease and multiple system involvement (even the potential for) will require seeing multiple specialists.
- You’ll be spending a lot of money. It is what it is. Be an active participant. Consider your doctor’s advice and try to understand risk factors. On more than one occasion, I’ve asked my doctor to triage his recommendations so that I could afford it. He outlined the Must Do’s first, then gave me my What’s Next options. It helped.
- Prepare to get a second opinion. You’re not cheating on your doctor. Most, if not all, would encourage you to get a second opinion.
- You’ll be creating a long term relationship. Make sure you like and respect your doctor, and make sure they connect with you and show you equal respect. Consider personality types and gender. I see my rheumatologist more frequently than I see my parents. I’m stuck with my parents (haha). I have a choice in my doctors. (I live in a major metropolitan area. I realize if I lived with my parents in their rural community, I would need to take whatever doctor I could get.)
- Your doc alone won’t make you feel better. It takes a team. When I started this journey, I erroneously thought that my doctor would give me medicine, I’d take it, and I’d be better. I’ve never been so wrong. Autoimmune disease requires lifestyle changes that you may not be willing, able, or ready to make. You’re going to get to know yourself. Really well. It’s on you to get enough rest and reduce your stress. I’ve been doing this since 2011, and I still haven’t mastered it. But I keep trying.