The Reality of Living with Lupus: Coping and Treatment

Hey there!

So, I wanted to chat with you about something that’s really close to my heart: living with lupus. Now, if you’re like me, you’ve probably spent hours Googling your symptoms, trying to figure out why your body seems to have declared war on itself. Maybe you’re newly diagnosed, or perhaps you’re just curious about what it’s like to live with lupus. Either way, grab a comfy chair, and let’s talk about the reality of living with this challenging condition—what it’s really like, how we cope, and the treatments that can help.

What Is Lupus, Anyway?

First off, let’s break down what lupus actually is. Lupus is an autoimmune disease, which basically means that your immune system, the body’s defense against infection, decides to attack your own tissues and organs. Yeah, it’s as frustrating as it sounds. The most common form, systemic lupus erythematosus (SLE), can affect various parts of the body, including your joints, skin, kidneys, heart, and lungs. There’s no single test to diagnose lupus, and it can mimic other illnesses, which is why it’s known as “the great imitator” in the medical world.

I remember when I was first diagnosed. I had this strange rash on my face that wouldn’t go away, and I was constantly exhausted. Not just tired—like, bone-deep fatigue that no amount of sleep could cure. It took several visits to different doctors before I finally got the lupus diagnosis. And while it was a relief to have a name for what I was dealing with, it was also terrifying. What did this mean for my life? Would I be able to keep working? What about having kids? All these questions swirled around in my head.

Coping with Lupus: Day by Day

Let’s get real: living with lupus is tough. It’s not just the physical symptoms; it’s the emotional rollercoaster too. One day you might feel relatively normal, and the next day you can barely get out of bed. This unpredictability can be one of the hardest things to deal with.

Managing Fatigue

Fatigue is probably the most common and frustrating symptom of lupus. It’s not the kind of tiredness that a nap or a cup of coffee can fix. It’s more like your body just hits a wall and says, “Nope, not today.” When that happens, I’ve learned it’s essential to listen to your body. Over time, I’ve found a few tricks that help me manage:

Pacing Yourself: This one is crucial. It’s tempting to try and do everything on the days you feel good, but trust me, you’ll pay for it later. I’ve learned to break tasks into smaller, more manageable chunks and spread them out over time.
Resting Strategically: Rest doesn’t just mean sleep. Sometimes it’s about taking a break before you get too tired. I’ll often set a timer when I’m doing something physical, like cleaning or even writing, and make sure I take short breaks to avoid overdoing it.
Prioritizing: Not everything has to be done right now. I’ve had to learn to let go of my perfectionist tendencies and accept that it’s okay if the laundry waits another day or two. What’s important is taking care of my health first.

Dealing with Pain and Joint Issues

Joint pain and stiffness are other major aspects of living with lupus. For me, it’s usually my hands and knees that get the worst of it. There are mornings where my fingers feel like they belong to someone else, they’re so swollen and stiff. On those days, I reach for a few different strategies:

Heat Therapy: A warm bath or heating pad can do wonders for sore joints. It’s such a simple thing, but it makes a big difference.
Exercise: This one might sound counterintuitive, but gentle exercise can help reduce stiffness. I’m not talking about running marathons here—simple stretching or a short walk can help keep things moving. Just be sure not to overdo it, as too much exercise can trigger a flare.
Medications: Sometimes, you need a little extra help. Over-the-counter pain relievers like ibuprofen can help with inflammation, but if the pain is severe, talk to your doctor. There are prescription options that might work better for you.

Coping with Cognitive Issues (aka Lupus Fog)

“Lupus fog” is a real thing, and it’s more than just being forgetful. It’s like your brain is wrapped in cotton, making it hard to concentrate or remember things. I’ve had days where I couldn’t even string a sentence together. Here’s how I manage it:

Writing Things Down: I keep lists for everything. Grocery lists, to-do lists, even lists of ideas for this blog! It helps me stay organized and on top of things.
Using Reminders: My phone is full of reminders for appointments, when to take my meds, and even when to drink water. It’s all about taking the pressure off your brain to remember everything.
Staying Patient: This one is hard, especially when you feel like you’re not as sharp as you used to be. But I’ve learned to be kinder to myself and recognize that it’s okay to have off days.

The Emotional Impact of Lupus

Let’s talk about the emotional side of things for a bit. Lupus doesn’t just affect your body; it takes a toll on your mental health too. There are days when it feels like too much, when the frustration of not being able to do what you want gets overwhelming.

Dealing with Anxiety and Depression

Anxiety and depression are common in people with lupus. It’s not hard to see why—when your body is constantly fighting against itself, it’s easy to feel like you’re losing control. I’ve struggled with both over the years, and I’ve found that talking about it helps a lot.

Talking to Someone: Whether it’s a therapist, a friend, or a support group, having someone to talk to can make a huge difference. It helps to know that you’re not alone, that other people get what you’re going through.
Mindfulness and Meditation: These practices can help you stay grounded, especially when your mind starts to spiral. I started with just a few minutes a day, focusing on my breathing, and gradually built up from there.
Medication: There’s no shame in needing a little extra help. If your anxiety or depression is interfering with your life, talk to your doctor. There are medications that can help, and finding the right one can make a world of difference.

Coping with the Fear of Flares

Flares are unpredictable, and that uncertainty can cause a lot of fear. I’ve spent too many nights lying awake, worrying about when the next flare will hit and how bad it will be. Here’s what’s helped me:

Learning Your Triggers: Over time, you might start to notice patterns—certain foods, stress, or even the weather can trigger a flare. Keeping a journal of your symptoms and what’s happening in your life can help you spot these patterns and avoid triggers where possible.
Planning Ahead: I always have a “flare plan” in place. It includes having meals prepped in advance, medications within reach, and a support system ready to help if I need it. Knowing I have a plan in place helps reduce the anxiety around flares.
Accepting Uncertainty: This is the hardest part, but learning to live with uncertainty is key. I try to focus on what I can control, like taking my meds and resting when I need to, and let go of what I can’t control.

Treatment Options for Lupus

Now, let’s dive into the nitty-gritty of treatment. There’s no cure for lupus, but there are treatments that can help manage the symptoms and reduce the frequency of flares.

Medications

NSAIDs (Nonsteroidal Anti-Inflammatory Drugs): These are usually the first line of defense against pain and inflammation. They’re great for managing mild symptoms, but they can cause stomach issues if used long-term, so it’s important to use them under a doctor’s guidance.
Antimalarials: Yes, you read that right. Drugs like hydroxychloroquine (Plaquenil) were originally used to treat malaria, but they’ve been found to be effective in controlling lupus symptoms. I’ve been on Plaquenil for years, and it’s made a big difference in reducing my flares. There’s even evidence that it may improve survival rates for lupus patients .
Corticosteroids: These powerful anti-inflammatory drugs are used to control serious lupus symptoms. They’re effective, but they come with a host of potential side effects, like weight gain, osteoporosis, and an increased risk of infections. Because of this, doctors usually prescribe the lowest effective dose for the shortest possible time.
Immunosuppressants: These drugs suppress the immune system to prevent it from attacking your own tissues. Medications like methotrexate and azathioprine fall into this category. They’re often used when lupus affects major organs like the kidneys or heart. However, they do increase the risk of infections, so regular monitoring is essential.
Biologics: A newer class of drugs, biologics target specific parts of the immune system. Belimumab (Benlysta) is the first biologic approved specifically for lupus. It works by blocking a protein that can cause inflammation. While it doesn’t work for everyone, it’s been a game-changer for some people with lupus.

Lifestyle Changes

While medications are essential, lifestyle changes can also play a big role in managing lupus symptoms.

Diet: There’s no specific “lupus diet,” but eating a balanced diet rich in fruits, vegetables, and lean proteins can help reduce inflammation. I’ve found that avoiding processed foods and cutting back on sugar has helped me feel better overall. Some people with lupus are sensitive to certain foods, like gluten or dairy, so it’s worth experimenting to see what works for you.
Exercise: Regular, gentle exercise is important for maintaining joint flexibility and reducing stress. On days when I’m feeling good, I’ll do some light yoga or take a walk. It’s important not to overdo it, though, as too much exercise can trigger a flare.
Stress Management: Stress is a major trigger for lupus flares, so finding ways to manage it is crucial. For me, that means setting aside time each day for activities I enjoy, like reading or listening to music. I’ve also started practicing mindfulness meditation, which has helped me stay calm even when things get overwhelming.
Sun Protection: People with lupus are often sensitive to sunlight, which can trigger flares or cause skin rashes. I’ve learned to be diligent about wearing sunscreen, even on cloudy days, and I always have a wide-brimmed hat and sunglasses handy.

Living with Lupus: Finding Your New Normal

Living with lupus means finding a new normal. It’s not about giving up the things you love but learning to do them differently. For me, that’s meant making some adjustments to my life and finding ways to keep doing the things that make me happy.

Staying Social

One of the hardest things about lupus is how isolating it can be. There are days when I just don’t have the energy to go out or even have friends over. But staying connected with loved ones is so important. I’ve learned to be open about my limitations with friends and family, and they’ve been incredibly supportive. Sometimes that means hanging out in my pajamas and watching a movie at home instead of going out, and that’s okay.

Working with Lupus

If you’re working, figuring out how to manage your job while living with lupus can be tricky. I’ve had to make some adjustments to my work routine to keep things manageable:

Flexible Hours: If possible, talk to your employer about flexible hours or the possibility of working from home on bad days. I’ve found that being able to adjust my schedule around my energy levels has been a huge help.
Taking Breaks: It’s important to take regular breaks throughout the day to rest. I set reminders to get up and stretch or just close my eyes for a few minutes.
Communication: Don’t be afraid to communicate with your employer about your condition. Being upfront about your needs can help them understand why you might need certain accommodations.

Planning for the Future

One of the hardest things about lupus is the uncertainty it brings. You never know when a flare will hit or how it will affect your life. But I’ve found that planning for the future helps me feel more in control:

Building a Support System: Having a network of supportive friends, family, and healthcare providers is crucial. They’re the ones who will help you through the tough times and celebrate the good ones with you.
Setting Realistic Goals: It’s important to set goals that are achievable given your limitations. I’ve learned to be flexible with my goals and to celebrate even the small victories.
Staying Informed: Lupus research is constantly evolving, and new treatments are being developed all the time. Staying informed about the latest advances can give you hope and help you make informed decisions about your treatment.

Conclusion: You Are Not Alone

Living with lupus is a journey—one with ups and downs, good days and bad. But you don’t have to go through it alone. Whether you’re newly diagnosed or have been living with lupus for years, it’s important to reach out for support, stay informed about your condition, and take care of yourself, both physically and emotionally.

Remember, it’s okay to have bad days. It’s okay to need help. And it’s okay to put your health first. Lupus may be a part of your life, but it doesn’t have to define you. You are so much more than this disease, and you have the strength to keep moving forward, one day at a time.

Thanks for reading, and take care of yourself. We’re all in this together.

References

Mayo Clinic Staff. (2022). Lupus. Mayo Clinic. Retrieved from https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
National Institutes of Health. (2021). Systemic Lupus Erythematosus (Lupus). National Institute of Arthritis and Musculoskeletal and Skin Diseases. Retrieved from https://www.niams.nih.gov/health-topics/lupus
Lupus Foundation of America. (2022). Lupus: Treatments and Medications. Lupus Foundation of America. Retrieved from https://www.lupus.org/resources/lupus-treatments-and-medications

I hope this post resonates with you, and if you’re dealing with lupus, know that you’re not alone. Feel free to share your thoughts or experiences in the comments below—I’d love to hear from you!