Patient Voices: Managing Life With Lupus

December 22, 2023

Living with Lupus is not easy. It has its ups and its downs and every day can be so unpredictable. I’ve had lupus for seven years and every year I learn something new about myself and my journey. I used to be a person who always said, “yes,” but overtime, I’ve learned to set boundaries, speak my truth, and prioritize my needs. I know that if I do not show up for myself, that I can’t show up for anyone else. I eventually learned many tools to help me cope with my lupus daily, all of which have served me well over the years. Some of those things have been; journaling, meditation, sky-gazing, movement, eating well, always getting a restful night’s sleep, maintaining low levels of stress, listening to positive affirmations, and not overcommitting myself. Especially now, we are knee-deep in the holiday season which for most of us is always a very stressful time. We are surrounded by people and flooded with social obligations, sometimes just thinking about what is ahead can be exhausting in and of itself. Living with lupus is a constantly evolving journey of self care. 

One thing that I do not take for granted is getting a solid night’s sleep. At a bare minimum I make sure to sleep at least eight hours a night, and when I’m physically exhausted, or in flare mode, I can easily sleep ten to twelve hours. Rest has been such a pivotal part of managing my diagnosis. After a solid night’s sleep I know that I have the bandwidth and wherewithal to handle any situation and assess how I am genuinely feeling the next morning. I can think clearly and inevitably put my best foot forward. Not sleeping enough gives me anxiety and can be a slippery slope for ending up in a flare. On the other hand, sleep is the one thing that helps me most when recovering from a lupus flare. I finally learned that in those moments, rest is one of, if not the most important thing that I can do for myself. 

In addition, maintaining low levels of stress has been crucial for me. I refuse to let any situation or individual stress me to the point of anxiety, angst, or that uncomfortable feeling that you get in the pit of your stomach. In the past, to my own detriment, I have allowed toxic relationships to go on for too long, leaving me in a state of constant flare. I finally learned to let things roll off my back and cut certain people out of my life. I handle every situation one at a time, one day at a time, and never take things personally. I realize now that if anyone is causing me stress in my life and cannot understand my limitations, that they are not someone that I want to have around me. No person or situation is worth the risk of a flare, because at the end of the day, I am the only one who suffers. Nothing is worth stressing over. Always speak your truth and listen to your body.

With that said, my diagnosis gave me the confidence and strength to finally set boundaries and stop overcommitting myself. About a year after my diagnosis, when I was feeling good, I went back to my normal routine pre-diagnosis. It quickly became too much, and in order for me to preserve my health, I knew that I had to scale things back. As hard as it was to do so, I now only schedule three things per day, anything more than that is too much for me. While that works for me, something else might work better for you. The journey of managing this disease looks different for everyone, and in time, it is of the utmost importance for each of us to figure out what best serves our needs.

In particular, movement is my saving grace. I am so thankful to have the ability to practice yoga four to five times a week. My practice has allowed me to understand exactly what is going on with my body and has been a great resource to calm my mind. If I cannot do certain things while on my mat, I know that my body and mind need rest. I never fight the signs, but use them as tools to stay ahead of any flares. Sometimes I physically do not have the ability to get on my mat, therefore I lean into something more gentle, like walking or stretching at home. A little bit of movement can really go a long way. My physical activities have served as a great form of self-care whether I move for ten minutes or for an hour. Every little bit helps. Moreover, during those times when I am physically unable to move due to a flare, I scale everything back significantly, embarking on simple things that I can do from my bedroom to calm my mind and find some peace within my day and situation. Meditation and sky-gazing have gotten me through some of the most challenging moments. The calm and peace that I find, either by closing my eyes and focusing on my breathing, or by gazing at the moving clouds, leaves me with a sensation that everything is going to be ok. I vividly remember watching the clouds part and the sunrise the morning of my open heart surgery and I had never felt so calm and ready for something in my entire life. 

Journaling has and still is so important to me. It’s a safe space to write down exactly what I’m feeling and exactly what I’m going through. It’s hard when the people around you have no idea what you’re experiencing. They want to be there for you, however, they don’t necessarily always do or say the right things. They mean well but journaling is a great outlet to be honest about the feelings, sensations, mental, and emotional stress that you’re experiencing, not just during a flare but everyday.

Oftentimes, I find that the hardest part of any flare is dealing with the mental and emotional struggles. I get so down on myself and frustrated that there is no quick fix, all I want to do is live my life and feel my best. In the past, I have found that I create additional physical stress on my body by trying to ameliorate any symptoms that I am experiencing. Instead of resting, I get up and force myself to do physical activity thinking that it’s going to help the situation, when inevitably, only makes it worse. I eventually learned to make peace with the fact that in those moments, there is nothing that I can do to truly move the needle besides rest. It’s infuriating when I can’t control a situation, but the sooner that I let go, make peace, and accept my current status, my body begins to heal faster. As hard as it is, the symptoms just have to run their course, and I hold onto the fact that what I am experiencing can’t last forever. 

Likewise, staying positive and knowing that each flare is only temporary helps me immensely. No matter what the situation, I always do my best to stay towards the light. It is so easy to crawl into a dark hole when flares signal, but in doing so, I only make things worse for myself. That said, I am certain that I am not alone in that thought process. Unfortunately, with lupus, we can’t rush the process, learning the art of patience and acceptance has allowed me to manage my flares much more efficiently. Positivity every day is how I live my life and has been pivotal in my ability to overcome the struggles of living with lupus. I know this disease is here to stay, and by maintaining a positive mindset I give myself the best chance at living my best life. With that mindset, it allows me to stay not only resilient but ahead of this autoimmune disease. When I find myself questioning everything, I listen to positive affirmations which have been such a great way to maintain constant positivity throughout my journey. 

A few years ago I finally began looking at my diagnosis as an opportunity to empower myself and handle every flare with grace and patience. Those challenging moments are opportunities to grow, and for me, has been a great outlet to share my journey and experiences with the community. I am honest with myself, stay positive, and own the fact that I have lupus. It is nothing to be ashamed of but something to embrace with your whole being. The journey is different for everyone and while we are all experiencing some of the same symptoms, regardless of what you’re feeling mentally, emotionally, or physically; always stay positive, mindful, never be afraid to speak your truth, and always prioritize your needs. It’s important to remember that at the end of the day, while those around you might feel sorry for you and do their best to support you, you’re the only one that suffers. Be confident in the fact that you are not alone in this fight, listen to your body, stay strong, and know that you can and will rise above it all. 

By Victoria Gibbs

Victoria Gibbs is an incredible lupus warrior, a yoga and meditation professional, wellness retreat host, yoga model, and health and wellness influencer based out of New York City. She grew up in Princeton, NJ and is a former ballet dancer and competitive yoga athlete. To watch Victoria’s most recent Guided Yoga Session for Lupus Warriors, you can view the session here, on Lupus LA’s YouTube Channel! To learn more about Victoria, visit victoriagibbsyoga.com.