My Personal Struggle
After years of bouncing from one doctor to another, I was finally diagnosed with my first autoimmune disorder, Lupus, in 2011. Little did I know how profoundly that diagnosis would change my life. I was immediately prescribed prednisone and referred to a rheumatologist.
At first, I felt a sense of relief. Finally, I had a name for the symptoms my previous primary care provider had dismissed for over a year as "just needing to lose weight and exercise." Needless to say, I found a new primary care provider—one who actually listened to me. My rheumatologist, Dr. Syed, was incredible. She gave me the space to cry in her office and even asked if I wanted to consider temporary disability. Those early years were filled with pain in my joints, monthly cortisone shots in my ankles, and countless medication trials. On top of that, I was dealing with undiagnosed gastrointestinal issues. Depression soon began creeping in. I found myself profoundly depressed, having not interest in anything, irritable, withdrawing from others, feeling hopeless, and struggling with thoughts of self-harm. Exhaustion—both physical and emotional—completely consumed me.
By 2018, more autoimmune and inflammatory diseases followed: Crohn's Disease, Hidradenitis Suppurativa (HS), Psoriasis, and Psoriatic Arthritis. I also was diagnosed with high blood pressure. I was now juggling appointments with a dermatologist, rheumatologist, gastroenterologist, and my primary care provider. I had been through so many medication trials that I lost count. My weight fluctuated, and the unrelenting fatigue persisted. Yet, I kept my struggles with depression—and even suicidal thoughts—to myself. I told myself, “I’m a therapist. I know how to handle this. I’m strong. I can push through.”
But I wasn’t as strong as I thought I was. Losing my job was the breaking point. Overwhelmed and defeated, I devised a plan. I went into the bathroom, took one of my husband’s razors, and sat on the floor. I was ready to end it all. But then, my husband came to the door. He heard me crying, came inside, and saw me sitting there. The look of fear and heartbreak on his face snapped me out of it. He helped me stand up—and saved me in more ways than one. At that moment, I decided I couldn’t do this alone anymore. I needed help, not just for myself, but for my family, too.
With the support of my primary care provider, I started taking an antidepressant. That decision changed everything. The medication has helped me immensely, and for the first time in years, I feel like I can finally start to reclaim my life.
Two more autoimmune diseases have been added over the past two years: eczema and rosacea. My Lupus, Crohn's, Psorisis, HS are all stable, but I still struggle with on-going flares of psoriatic arthritis and eczema. I also still struggle with fatigue.
The Impact of Autoimmune Disease on Mental Health
Living with an autoimmune disease, which is a chronic illness, can be emotionally and physically taxing. This can lead to increase stress, anxiety, and depression. Many individuals have challenges with daily living; managing multiple doctor appointments and medications. Many individuals also experience a sense of grief over the lifestyle they had before diagnosis. I know that I experienced this. I once enjoyed walking and going to the gym. Prior to autoimmune diseases, I enjoyed cooking for my family and being active. Now, I barely have enough energy to get out of bed!!
Taking Care of Yourself
Flares will come and go with autoimmune diseases! It is important to surround yourself with supportive, positive people. This may include working with a therapist. Get involved in a support group or volunteer in your community.
Moderate to Severe depression and anxiety symptoms don't just 'magically" go away. They must be treated by a mental professional.
Focus on the things that you can do or have control over versus the things you can't control or do. Be honest with yourself and what you are capable of doing. Also, communication with your family is a must. I had to be honest with my family in how I was feeling physically and that I couldn't clean the house or make dinner. My family has been extremely supportive and understanding. I have also been blessed to be able to work and have good health insurance. Co-payments can be expensive, but I am thankful to have access to specialty medication.
Lastly, be your own advocate with your medical professionals. Don't let them downplay your concerns. I have an amazing team of providers, although my rheumatologist is retiring June 30th! I had to "fire" a few providers along the way, but it was important to me that I worked with providers that are compassionate, listen to me, and go the extra mile to make sure that I am taken care of.