The ABCs of Lupus
Last updated: August 2023
It’s hard living with lupus. It takes patience and understanding. I love words and I had to learn to talk to myself a certain way that helped me defeat lupus daily. Day in and day out I find myself talking to myself. Sometimes the words are helpful, other times the word are not too flattering. On those not so flattering days, I made a list of things that I could look at to get some encouragement. I sometimes use the ABCs of lupus as a bible of sorts to refer to when I need it.
The ABCs of lupus
We all know the alphabet song. But have you ever thought about using the alphabet to help you on your lupus journey? I thought about what my go-to words from letters of the alphabet would be. As a result, this is a collection of words that help me with some of the challenges and remind me what I need to do to stay healthy. All in all, some were to remind me of my overcoming and others were thought of to empower me to move forward. Maybe they can stir the same within you.
The lupus alphabet
A - Awareness
Awareness is the first step towards understanding lupus. Educating myself and others about the symptoms, causes, and impact of this disease is important. I believe awareness can work towards quicker diagnosis, better treatments, and a more supportive community.
B - Body
Taking care of your body is crucial when living with lupus. Balancing rest and activity have helped me tremendously. Having a healthy diet, staying hydrated, and following my treatment plan is pivotal to manage symptoms. Ultimately, they all assist in keeping the body healthy and strong.
C – Coping
Coping with lupus can be challenging, both physically and emotionally. I had to find effective coping strategies. Things like asking for help from loved ones, joining support groups, practicing mindfulness, and engaging in hobbies, help to instill resilience within me daily.
D – Doctor
Building a strong relationship with a knowledgeable rheumatologist is essential. I am able to ensure that my treatment plan is always tailored to my specific needs with regular check-ups, open communication, and shared decision-making
E – Empowerment
Empowering yourself with education about lupus is key. Being an active participant in your own care can make a big difference. Staying informed about the latest research, treatment options, and management techniques helps. This helps me to understand how knowledge is power.
F – Fatigue
Fatigue is one of the most common symptoms of lupus. It was a game changer when I learned to manage my energy and stress levels. Planning activities in advance and listening to my body's cues have been so important in combating fatigue. I learned to pace myself and put self-care first. It is always hard to stop myself from pushing beyond my limits.
G – Grace
I often struggle with grace. Being kind and patient with myself is hard. I had to really learn and be honest with myself that living with lupus is a continuous journey. When I embraced self-compassion and celebrated the small victories along the way it made grace a little easier to give myself.
H – Hope
Hope was a little easier for me to accept. Although living with lupus can be challenging, I learned that hope would get me through the day. Staying positive and surrounding myself with a supportive network helps to keep hope alive.
I – Individuality
Each person's experience with lupus is different and unique. I was able to understand how comparison was not necessary when I began to embrace my individuality. I had to focus things that worked for me and my specific needs and goals.
J – Joy
Despite the challenges, finding moments of joy every day in my life is essential. Therefore, I work to participate in activities that bring me happiness. It could be spending time with loved ones, coloring, or walking and enjoying nature. Joy is my goal and helps to keep me healthy in so many ways.
K – Knowledge
Knowledge is power. It continues to help me make informed decisions and be an active participant on my healthcare journey.
L – Lifestyle
Many times, we neglect to deal with our lifestyle choices. Living a healthy lifestyle is beneficial to manage lupus symptoms. Regular exercise, a balanced diet, stress reduction techniques, and avoiding known flare triggers can improve symptoms and decrease flares.
M – Mindful
Being mindful helps to keep me in my now. Mindfulness is a way for me to keep my sanity. It teaches me what is truly important to focus on and helps calm my mind. This ultimately helps my stress levels to decrease.
N – Nurturing
Nurturing my mind, body, and spirit is very important on my lupus journey. It can get rough dealing with lupus and engaging in activities that bring me relaxation helps. Activities like meditation, yoga, and spending time in nature are daily activities that help me with caring for me.
O – Optimism
Having an optimistic mindset helps me face the ups and downs of living with lupus. More importantly, surrounding myself with positive people and practicing gratitude brings an energy of balance. Optimism makes be see the potential in those hard days instead of the limitations.
P – Patience
They say patience is a virtue in life and it is also one when dealing with lupus. Because of the unpredictability of lupus, patience often became the only thing I could give myself. Undoubtably, being patient with myself is hard. In addition, I further have to constantly extend that to my loved ones and the process of finding what works best for me on my lupus journey.
Q - Quality of life
When I was first diagnosed my quality of life dramatically changed. It became the most important thing to me to get back to some semblance of what I felt was meaningful to me. As a result of the dramatic changes, I had to find different activities to fill the void. Changing and adapting is always difficult. But, I found it to be completely possible.
R – Resilience
As Bob Marley said, “You never know how strong you are until being strong is your only choice.” This statement is the epitome of resilience to me. The inner strength that has come over me with lupus challenges amazes me daily. Resilience is a work that I whisper almost every day. I use it to remind myself that I will overcome any challenge that comes my way.
S – Support
After I was diagnosed, I felt alone and isolated. Therefore, building a strong support system around me became crucial. I am always on a quest to surround myself with family, friends, doctors and other lupus warriors who understand and empathize with me. To that end, I started my own support group both online and in person to connect with other lupus warriors.
T – Triggers
I want to always take proactive steps on my lupus journey. So, finding out what triggers my flares is important to me. For this reason, I often use food and mood journals to help identify flare triggers. Consequently, it helps to manage my flares better daily.
U – Understanding
Understanding lupus and how it affects my body is essential. This understanding gives me the opportunity to empower myself in my day-to-day activities. Additionally, the understanding of my own journey gives me a chance to create a healthier life plan.
V – Voice
My voice has been my biggest asset on this lupus journey. I raise awareness about lupus, speak up for my needs and most importantly advocate for myself and others. I know my voice is powerful. Sharing different experiences can be very healing and can inspire and support others.
W – Wellness
Being well beyond lupus for me is crucial. Therefore, making sure my physical, emotional and mental well-being is taken care is my goal. I make sure that I am doing the things that are right for my body. This includes things that keep me well like resting before my body forces me to. Not overdoing it when I am feeling well. Managing my stress levels daily. And prioritizing quality rest, sleep and exercise.
X – eXcuses and eXpectations
Removing excuses from my being was a difficult thing to do. In fact, when I was diagnosed, I often used lupus as an excuse not to meet the expectations I had for myself. I had to learn to adjust my expectations to fit exactly where I was so that my excuses would be minimal. Often adjusting plans and my own mindset created a flexibility and freedom in me.
Y – You
I talk to myself daily. First, I have to say to me, “remember, you are more than anything lupus can put you through.” I mumble often, “don't let lupus define you, just allow it be a part of your story.” Overall, the story that shows the resilience and strength in the fight is what I tell myself needs to be told.
Z – Zeal Zone
Finally, the zeal zone is where I try and place myself daily. Embracing life with zeal and enthusiasm makes a world of difference. Pursuing newfound passions has become the norm. Following new dreams and seizing every opportunity that coms my way is the ultimate goal. Because, although this lupus journey may be challenging, my zeal and zest for a good life beyond lupus will be a testament to my indomitable spirit.
In conclusion, the ABCs of lupus serve as my reminder that each word represents a source of strength, guidance, and encouragement for me. By embracing these words, I am able to empower myself and others. Sometimes words can cut like a knife. Other times they will uplift and inspire. Either way, to me words are an important part of helping me deal with lupus on a daily basis.
If you could create your own ABCs of lupus, what words would you add? Let me know in the comments.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?