5 Life Lessons an Autoimmune condition will teach you
This week marks six years since my lupus diagnosis and over seven years since my first flare up. As I think about how lupus has affected my life, a recurring theme was fear. In terms of my lupus journey, I’ve learned that the mental hurdles are just as challenging as the physical ones. This has also been a story of strength and finding joy in places where I least expected it. As I reflect on these years, I’m sharing a few things that I’ve learned along the way and I let them serve as reminders.
Don’t let fear keep you from living your life.
It’s easy to let fear and anxiety creep into your life when you have an unpredictable medical condition like lupus. It’s important to remember to not let that keep you from living your life. Don’t let the fear of a flare up stop you from having experiences. Make the most of the times when you feel good and don’t be afraid to book the trip. Early on in my diagnosis, I had anxiety around traveling. I was fearful that I would have a flare up while on a trip or a vacation. In 2017, I had the opportunity to travel to France for the first time. This was shortly after being diagnosed and I was certain that this trip would cause me to get sick. I almost let this fear stop me from going. Of course, I was fine and it ended up being one of the best trips that I’ve taken. It’s easy to think that the added stress of travel could trigger a flare up but remember…
Take the right steps to prepare. Check-in with your physician and live life.
Sure, it might be a risk but don’t stop your life for what-ifs.
Listen to and trust your body.
Pay close attention to what triggers your condition. It’s OK to say no and to maintain your boundaries. Your health is more important than any event, party, or moment. If you need to cancel plans at the last minute, people should understand. There have been times when I’ve had to miss events or cancel plans because I was not well enough. While I wasn’t always happy about that, my health is a priority and yours should be too. You might experience FOMO but the time will come again.
Build your tribe.
After being diagnosed, one of the hardest things that I had to process was that I felt like I was alone. I was living in a new city and did not have family nearby. I was afraid that if I got sick, there would be no one around if something happened. I will always stress the importance of a support system. Make an effort to build a community of friends and supporters. This is advice I would give to anyone. However, I magnify it for those living with a health condition. You never know when you’ll need support. I have people in my life now that would be at my side in a moment's notice if needed. Bonus: connect with other lupus warriors living in your area. It’s easy to feel like not many people understand what you are going through and having that in common is special.
Speak up.
Advocate for yourself with healthcare professionals. See providers who will listen to you and don’t stop searching until you find someone who will. When I had my first flare up and prior to being diagnosed correctly, I saw six different physicians. This included primary care doctors and specialists. I knew that what I was experiencing was not just a random infection but that something was not right. I went into each appointment and tried my best to explain what I was experiencing and was misdiagnosed or brushed off many times. It wasn’t until over a year later that I saw someone who pointed me in the right direction. Don’t be afraid to express your needs; especially at work. If you need an accommodation, it is within your right to get one.
Adjust your expectations.
Life will look different. You will no longer be living the life you thought you’d live. For me, this turned out to be a positive, but your plans may have to shift and you could end up grieving your health. How you cope with your diagnosis and managing your expectations can help with this. I encourage you to shift your outlook. The way that I chose to cope with my illness changed my life for the better. I found a new passion and career path and I’ve met amazing people. What you’ll learn and the strength you’ll gain from this experience, will help you to come out on top.
Paris, 2022
