Living with Lupus: The Unique, Unpredictable Journey


Lupus is a highly complex autoimmune disease that can affect any organ in the body. With the body’s immune system attacking healthy tissue, living with systemic lupus erythematosus (SLE) – the most common form of the disease – can be unpredictable and manifest in a variety of different symptoms such as skin rash, arthritis, fatigue and more. The unpredictable nature of this heterogeneous disease not only results in unique experiences for each individual, but also difficulty in diagnosing, treating and managing the condition.

Over the past several decades, the lupus community has seen more than twenty clinical trial programs fail, heightening the significant unmet need for more treatment options. While these studies may not have produced new approved therapies yet, it has propelled other research forward and made way for recent clinical breakthroughs which have provided hope to the lupus community. As new treatment options are made available, people living with SLE will have the opportunity to not only discuss their physical, emotional and socio-economic burdens with their doctors, but also work together to decide which therapies would work best for them and their individual symptoms.

With up to 300,000 people living with lupus in the US alone, that makes for 300,000 different stories to be told. Sheraya, Margo and Ingrid have all experienced lupus differently and each have a unique story they would like to share. Their hope is that these stories will resonate with other people living with this disease and that they can learn from each other to further connect the lupus community at large.

Don’t be afraid to challenge your doctors to get to know who you are as a person and advocate for your needs, especially if you feel they are not being met. Protect yourself, by educating and advocating for yourself.”

Sheraya

1. Tell us about when your journey with lupus began.

Sheraya: When I was diagnosed at age 18, nobody really said “This is lupus. This is what to expect. This is what is going to happen.” I mainly experienced symptoms in my legs – they would give out from fatigue with just daily activity. Being 18 and having my legs become so weak that I would fall was what prompted me to visit my primary doctor. Since lupus ran in my family (my mother lived with lupus for close to 30 years), my primary doctor referred me first to a neurologist to rule out any other possible causes of my symptoms. After numerous tests, the neurologist exhausted all his theories and I found myself at the same rheumatologist that was helping my mother. He saw many similarities with what I was experiencing and proceeded to prescribe me oral corticosteroid to help manage my disease.

Margo: At first, I had trouble swallowing and getting out of my chair, which made it difficult to eat and teach elementary school. My illness progressed very quickly and confounded a number of specialists until I met my first rheumatologist who told me that I had severe lupus and was not going to get better. They wanted me to go to a world-renowned specialist, but when I arrived at their office, I just broke down. She held a huge file of my information and said, “I want you to know you almost died.” My symptoms were incredibly difficult to endure, and due to the severity of the muscle aches and pains all over my body, I had to learn how to walk again. When my lupus was at its worst, I had to take chemotherapy which caused me to lose my hair and my ability to have children. This left me with an incredible mental and emotional burden that will stay with me the rest my life. All of this led to a loss of my independence and the ability to take care of myself, but I did everything I could to survive.

Ingrid: It was a long time coming getting to the point of a lupus diagnosis, especially since it was a bunch of little things that started to happen over the years. At just 10 years old, I experienced what many refer to as the butterfly rash. Then in my teenage years, Raynaud’s Syndrome manifested during softball season causing my fingers and toes to swell and become numb, making it difficult for me to enjoy a sport I loved. Finally, the most telling sign for me was in college when I was diagnosed with immune thrombocytopenic purpura (ITP) which is when your immune system attacks your platelets. The irony of it all was my sorority’s philanthropy partner was the Lupus Foundation of America, where I had so many resources available to connect the dots on my own before my official diagnosis. However, this didn’t happen until I was 23 and pregnant with my first child (first of three children). Looking back, I was living with lupus for close to 13 years before I was able to get the help I needed.

After my diagnosis, I never truly felt like myself. I just wanted to get back to my old self, before lupus. Now, due to my faith and a strong will to believe in myself, I found my way back to my true self: an outgoing, positive, life of the party, strong woman with a renewed passion for learning not only about myself, but my illness.

Margo

2. How has your mindset around lupus shifted since you were first diagnosed to now?

Sheraya: As someone who was young and just becoming an adult when I was first diagnosed, it all felt very confusing. I felt I had to learn how to live with lupus by myself and did not really take it seriously. Now that I am older and the fatigue can completely stop me in my tracks, I take the impact lupus can have much more seriously. But in general, how I’m doing just depends on the day.

Margo: I was devasted to learn I was diagnosed with a chronic illness with no cure. I felt very alone and that there was no light at the end of the tunnel, which was exacerbated by the brain fog associated with the disease. After my diagnosis, I never truly felt like myself. I just wanted to get back to my old self, before lupus. Now, due to my faith and a strong will to believe in myself, I found my way back to my true self: an outgoing, positive, life of the party, strong woman with a renewed passion for learning not only about myself, but my illness. My family has been really great, and I have some good friends that didn’t give up on me – even when I really gave up on myself.

Ingrid: The emotional journey that is attached to lupus, or any chronic illness, is just like a roller coaster. There are highs and there are lows. I wouldn’t be surprised if people try to diagnose you with bipolar or schizophrenia, because you just have so many feelings when it comes to this disease. One initial feeling for me was just being numb, being in denial, then being angry, because you’re like, “why me?” I’ve been through many rounds of treatment since that point and I’m still standing. It took many years for me to reach a point of enlightenment and acceptance of this journey. I am now grateful for the experiences I’ve had because it has made me the warrior I am today, and I am extremely proud of that.

I'd tell anyone – whenever you start – you are in charge of your happiness and it is your choice on the kind of journey you have. That is something I remind myself of every day.

Ingrid

3. How do you think other people living with lupus can learn through you and your story? What kind of advice would you share with them?

Sheraya: Find out as much information as you can, but don’t forget to write it all down because the brain fog is real. Connect with people that understand what you are going through. I felt I had to do this on my own, but that really is not the case. Even if you do not feel lupus impacting your life as much now, especially if you are experiencing symptoms when you are young, it does not mean it cannot progress over time. Don’t be afraid to challenge your doctors to get to know who you are as a person and advocate for your needs, especially if you feel they are not being met. Protect yourself, by educating and advocating for yourself.

Margo: One thing I learned through this whole journey, is that I have to be my biggest advocate. You have to have unwavering confidence and hope that there will be a cure, you will get better. Take your medication and talk about what you are going through and know that things are not as bad as they seem. My biggest mistake when I was first diagnosed was thinking I was alone on this journey. Stress is not your friend. One thing that helps me is teaching – my students bring an extra dose of laughter and positivity that is hard to find. You will still have your good days and bad days, and that is ok. Put on a little lipstick and keep on walking with your head held high!

Ingrid: It’s okay to be mad. It’s okay to be in denial. It’s okay to go through the phases of change. I don’t expect everybody to be where I’m at because of what it took for me to get here. So I can only imagine the time it takes anyone to get to a positive place. I'd tell anyone – whenever you start – you are in charge of your happiness and it is your choice on the kind of journey you have. That is something I remind myself of every day.