10 Things About Lupus No One Warned Me About
Last updated: September 2023
Living with lupus can be very challenging. When I was diagnosed I had to learn so many things on my own. No one in my family had lupus or any autoimmune issues so we were very clueless about what the future held. There are so many aspects of the condition that may not be immediately apparent and I definitely learned them the hard way. Here are some things that I wish I had known when I first got my lupus diagnosis.
Learning the hard way with lupus
1. Fluctuating symptoms
Lupus symptoms can vary widely and can change from day to day. This unpredictability can be frustrating and make it difficult to plan daily activities. There are days when I was bouncing off the wall with all the energy and the next day where I just couldn’t move and had to be in bed all day. Each day was a brand new surprise.
2. Multiple illnesses
Lupus is linked to various autoimmune issues and cancer. The likelihood of getting another diagnosis is much higher than those without lupus. You are always thinking it can't happen to me until it does. Fast forward 5.5 years later, I was diagnosed with Sjogren's syndrome and non-Hodgkins lymphoma. The new diagnosis left me feeling numb and I just couldn't believe it was real life.
3. Sensitivity to sunlight
I was such an outdoor person and loved being out in the sun. But, sun exposure can trigger lupus flares for some patients, causing skin rashes and other symptoms which was the case for me. I soon became a vampire and had to take extra precaution when going out. Sunscreen and protective clothing are now a part of my daily essentials.
4. Emotional impact
Lupus can take a toll on your mental health. It's not just a physical illness; it can lead to anxiety and depression due to the chronic nature of the disease. It was especially daunting in the very beginning of my lupus journey. I had so many questions and had no idea what my future was going to entail. I just kept thinking about all the what ifs and how I had to say goodbye to my old life.
5. Medication side effects
Some lupus medications can have significant side effects. It's important to work closely with your healthcare team to manage these effects. The medication that I hated the most was prednisone. I had such terrible moon face and I gained so much weight. I also had stomach issues when I first started Cellcept and Imuran. But, in the end it did help.
I never understood what it was meant when people said they were in a flare until I had to go through it. Lupus flares basically means worsening of symptoms. Learning our triggers has been a tremendous help and has made it easier to navigate.
7. Chronic pain
Lupus can cause joint and muscle pain that can be chronic. I never thought at such a young age my body could ache so much. The pain was even worse when I flared and finding effective pain management strategies was very crucial. I would resort to medication, topical ointments, stretches and massages.
8. The impact on relationships
Lupus can strain relationships with family and friends, as it can be difficult for others to understand the condition's unpredictability and limitations. Some people didn’t accept or want to believe what I was going through. I realized who my real friends and this was a tough lesson to endure.
9. Financial impact
I never realized how costly things would get. With lupus, I had various organs being affected so I had to see multiple doctors. This led to multiple copays and seeing these doctors on a regular basis adds up. The cost of medication and unexpected visits added up even more. Instead of having to save for a fun trip I was saving for medical expenses.
10. Self advocacy
I never realized I had to be my own advocate. I thought doctors would be on my side and teach me everything that I needed to know. But, being your own advocate in managing lupus is crucial. You may need to educate yourself about the condition and assertively communicate your needs to your healthcare team. If you aren’t getting the proper care you need to speak up and if needed fire those bad doctors and find a new one.
What are some things you were warned about when you first got your lupus diagnosis?
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?