Patient Voices: Lupus & Mental Health 

September 16, 2022

Patient Voices: Lupus & Mental Health by Krissy Stephenson

I have battled anxiety most of my life. This is my story with mental health illnesses. I want to start off by saying you are not alone. Your life matters. You are not unlovable. We need exactly who God created you to be. You are more than your mistakes and your worst day. I have seen God love me through the messiest parts of my life. September is suicide prevention month. If you’re struggling and your thoughts are becoming too big, please reach out! The Suicide Prevention Lifeline is #988.

I was a type 1, goal oriented, go-getter when I was younger. I got validation and worth by working hard and getting good grades. That’s what filled me. It gave me purpose and confidence. I say “I was a type 1” because while some say don’t let this disease define you, there are some aspects of your life that are undeniably different because of lupus and chronic illness and it is out of your control.

The first diagnosis I ever received was general anxiety disorder. I was 17 years old. I remember getting my ACT score… I had a tutor and I studied so hard. Then one day I received my 2nd ACT score. I started spiraling, feeling like I was drowning. Despite working hard my score fell into the range of  “you aren’t smart and you’re not going to the school you worked so hard to get into”. One test…it felt like my future and worth was tied to this one dumb test.

I won’t get into the details, but I felt like I needed to be punished. I felt like how could I not do better when I did everything I could to succeed? It was the first of many times I would be humbled by trying so hard, but not succeeding. The first time I saw a therapist was after that incident. I also started medication when therapy wasn’t enough. Most of my friends didn’t understand. It was just a test. I was so lonely and felt misunderstood. Friends and family thought it was something I could turn on and off and that was not the case.

I was diagnosed with RA for 10 years before I was diagnosed with lupus diagnosis and got the combination of what I call “Rhupus” – rheumatoid arthritis & lupus. My rheumatologist took a complete top to bottom approach and helped me understand that part of lupus is anxiety and depression. Of course, mental health affects every disease, difficult season or can show up as its own diagnosis. This was the first time I heard anxiety be described and monitored as a symptom of lupus. The National Library of Medicine says “Psychological manifestations such as depression and anxiety are very common. Major depression is present in approximately 25% of lupus patients, and major anxiety in 37%. These presentations are often among the earliest symptoms to manifest in lupus.” The first symptom to manifest in lupus….THE FIRST SYMPTOM!!! I wonder how many people have lupus and are being tossed into the “it’s all in your head” “it’s just anxiety” blanket diagnosis? I know I heard it so many times! 

11 years ago, after having my first son I was diagnosed with postpartum depression. Depression wasn’t something I had experienced before. I’m more of an anxiety type of gal! I was well prepared for lack of sleep, but no one told me changing diapers and breastfeeding would be extremely challenging. That your spoons deplete within the first hour of being awake and there is no spoon mortgage program. People shamed me about formula feeding my baby. I tried very hard to breastfeed my son, but as I was absorbing shame and other people’s opinions, I ignored a very helpful solution…formula feeding! My disease started to flare so bad, I was in so much emotional and physical pain. I needed help. I went back to therapy, found help watching my son, I started back on my biologic for RA and started an antidepressant. All that sounds easy, but it felt impossible. Asking for help is not easy, but it is extremely brave.  

Throughout my life I have been told “you’re too much”. I have lost many friends who didn’t want to sit with me through the fire of mental health issues and chronic pain/autoimmune diseases. I want you to know that you are not “too much” but “more than enough”. I believe that you were created for a purpose and we need you here. 

Some things that have helped me:

  • Therapy: I heard once that finding the right therapist is like dating. I completely agree! I am thankful I have a wonderful therapist who also deals with lupus and chronic health issues. That has helped me so much!
  • Medication: I have been on meds for years to help with the crippling symptoms of both anxiety and depression. I recently learned to speak up during doctor appointments about my rising anxiety and to switch up meds or doses. Don’t be ashamed. Meds really can make a difference in your quality of life. 
  • Exercise or getting outside: I used to hate when exercise would be recommended. Like..ummm.. I barely have the energy to shower how do you expect me to exercise? For me, even doing stretches in bed, or chair yoga can help get some of the angst out of me and help me. If it’s just an awful day, my goal is to get outside for even 10 minutes. I used to live in the sun and that was my hobby, but after having lupus UV light now causes flares. I go outside when the UV is at its lowest. 
  • Learn to breathe: This sounds easy, but I had to learn and still am practicing my breath work. 
  • My relationship with Jesus Christ: When I was 15 years old my life changed forever when I accepted Jesus as my Lord and Savior. Jesus has never left me. He has provided miracles that can only be explained by Him. On my loneliest, darkest days He is with me. Because I can’t see Him with my eyes, I sometimes pull a chair up to my bed to remind me that He is here. This is one of my favorite Bible verses: “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.” Romans 8:26-28

Staying mentally healthy takes work and advocacy for yourself. Let’s keep talking about it. Let’s keep spreading awareness. Check in on your loved ones. You are so loved!❤️

By Krissy Stephenson

Krissy Stephenson has been living with chronic illnesses for over 12 years. Her full time job is managing her health and household with a supportive husband, two boys and 2 dogs. For Krissy’s full lupus story, watch Season 2, Episode #6 of the #YourStoryOurFight Podcast at lupusla.org/podcast! You can also watch the full episode here, on Lupus LA’s YouTube Channel.


The contents of the Lupus LA website, such as text, graphics, images, and other material contained on the Lupus LA website (“content”) are for informational purposes only. The content is not intended to be a substitute for professional advice, diagnosis, or treatment. Always seek the advice of a mental health professional or other qualified health provider with any questions you may have regarding your condition. Never disregard professional advice or delay in seeking it because of something you have read on the LupusLA.org. 

If you are in crisis or you think you may have an emergency, call your doctor or 911 immediately. If you’re having suicidal thoughts, call 1-800-273-TALK (8255) to talk to a skilled, trained counselor at a crisis center in your area at any time (National Suicide Prevention Lifeline) or call the Suicide Prevention Lifeline is #988. If you are located outside the United States, call your local emergency line immediately. 

More on Lupus and Mental Health: