In honor of Lupus Awareness Month, here is some information you won’t likely learn from typing “Lupus” into your search bar:
- Everyone’s experience is different.
Really, really different. SLE (as distinct from other forms of Lupus) is a systemic disease, which means it can affect ANY part of your body. There are symptoms and complications that are more common, and others that are less common, and plenty that are rare, so any individual’s constellation will be unique. That makes lupus tricky to diagnose. (On average, a lupus diagnosis occurs about six years after the patient first notices symptoms.) It also means that one lupus patient’s experience cannot be applied to that of another patient, so it’s important not to make assumptions.
- Even mild to moderate expressions of Lupus can be disabling.
Even though I don’t have significant organ damage and don’t typically have substantial pain, there have been times when I’ve been disabled by Lupus. I’ve been unable to complete daily tasks and had to rely on my spouse to make sure I ate and took my meds. I’ve used wheelchair transport in the airport because I couldn’t walk with my carry-on from one terminal to another. It’s thankfully been a long time since I’ve experienced this kind of disability, but it can happen even for those whose diseases are more manageable.
- Having the right doctor can make all the difference.
When you’re reading online, it can seem like any rheumatologist (doctors who deal largely with arthritis and similar diseases) will be equally able to treat SLE and other autoimmune diseases. And while board-certified rheumatologists are indeed qualified to do this, and most Lupus patients see a rheumatologist for the primary treatment of their disease, finding a rheumatologist who has a lot of experience with SLE can make a big difference in how you feel. My first specialist was, I’m confident, a good and capable doctor who may well become a strong care provider for those with Lupus. But she relied on my blood tests to tell the whole story (spoiler alert: they don’t), did not recognize my own description of my symptoms as valid, and did not tell me that there were additional safe and effective treatment options that could improve my quality of life. After I transferred to a rheumatologist who is active in Lupus research communities and has accumulated many years of experience working with Lupus patients, my care improved dramatically. While in many areas rheumatologists are thin on the ground, if it’s possible to find a doctor who has a good deal of experience with this disease, working with them can tremendously improve quality of life.
- It takes a long time to feel better.
For me, it was about six months after I began treatment before I had really noticeable improvement in my symptom baseline—and I was still very sick. It’s only now, pushing 3 years since I was diagnosed and began treatment, that I am beginning to feel truly healthy. We tend to expect medication to make a big difference within days, if not hours. But even those of us who are fortunate enough to respond well to treatment will likely spend years after diagnosis with life-altering symptoms before we start to regain our lives.
- There is hope, actually.
Reading about Lupus online can be pretty alarming if you care about someone who has it. (My mom once had to stop herself from calling me in the middle of the night because she’d read that people with SLE have a life expectancy of 3-5 years from diagnosis. Thanks to effective treatments, this is not true.) But it’s not hopeless. While very many people do still die from complications from Lupus, many others go into long-term remission, or at least are able to have a normal life expectancy and quality of life. Though I am not in remission, I am able to live a pretty “normal” life these days: I usually have enough energy to do what I need to do and even what I want to do. I very rarely have pain that interferes with my functionality. When I have flares, they are shorter and much less severe than they once were.When I was first diagnosed, and for the first year or more afterward, I was terrified that my level of sickness at diagnosis would be my level of sickness forever. I was terrified that I would not be able to be the kind of wife, priest, and (hopefully) parent that I would like to be. I was terrified that I wouldn’t be able to live my life in a way that felt meaningful to me. And none of that has turned out to be true. With the support of an amazing rheumatologist and an amazing-in-even-more-ways spouse, I no longer live with this fear. I know that I will still have bad days, and maybe even bad weeks, but I know that those will not be the sum of my experience.
But the terror and despair I initially felt were real, and others’ imposition of hope at that time would not have been helpful. Everyone’s experience is different, and it remained to be seen how my particular case would develop. The best resource for learning about any individual’s experience with Lupus is that person. The most helpful thing people could do for me was not to tell me about treatments they’d heard about or their great aunt who was permanently disabled by Lupus, but just to listen to how this disease was affecting my life and to be willing to hear that I was struggling. So if someone you love has Lupus, hold on to hope for them, but don’t impose that hope on them. Listen, and ask how you can best support them on their own unique journey with this lifelong illness.