“‘Well, the good news is you don’t have carpal tunnel,’ the orthopedic surgeon told me. For about two seconds, a wave of relief washed over me. No carpal tunnel meant no surgery, which meant I could still hold my daughter. Just as quickly as the relief had washed over me, it was replaced by a hot, burning fire of anger.
‘If it’s not carpal tunnel, what is it?’ I asked the doctor. I thought back to all the years I had spent going to the doctors through the Army and the VA. Months of occupational therapy and so many braces, trying to find out which one was going to be the right one. The ‘needle in the haystack’ that was going to finally get me some relief from the constant pain and swelling in both my left and right hands and wrists. Years of trying all these different types of anti-inflammatories and getting treated like a drug addict because I kept telling them that none of them were working. Now, after years of begging for surgery to just get little relief, it’s not even what they told me it was? I heard the doctor continue to speak, so I focused on him.
‘However, I’m pretty sure this is something you will live with for the rest of your life. You need to get ahold of your PCP and have her run some tests for autoimmune diseases, specifically for lupus and rheumatoid arthritis. I’m sorry I couldn’t help you more. Good luck,’ the doctor said as he shook my hand and swept out of the door. Confused, I walked to my car and called my PCP, Jeanette, who immediately got me in for a blood draw.
A few days later, I was driving when my phone pinged that I got a new email. I saw it was from Jeanette. I pulled over to the side of the road and read the results and her note at the bottom stating my blood work came back abnormal, and it appeared to be due to autoimmune activity. I sat the phone down and ugly cried in my car. I was only 27. I wasn’t supposed to be sick. I knew my life was going to change, and I was so tremendously scared.
My first experience with a rheumatologist was not a good one. The female doctor came in, barely looked at me, admitted she hadn’t read my chart, and announced I didn’t have lupus. I now tell everyone who goes to a doctor and feels like they weren’t heard or they were rushed to get a second opinion, which is exactly what I did. My next doctor, using the American College of Rheumatology classification criteria, which is a list of 11 symptoms and other things like a positive Anti-Nuclear Antibodies test, diagnosed me with Systemic Lupus Erythematosus. Along with the diagnosis of lupus, I was also diagnosed with Fibromyalgia, Raynaud’s Phenomenon, and Ehlers Danlos Syndrome. My doctor took his time to explain each and every one of them, with the possible treatments on handouts he had made on his own. I was incredibly lucky to have been diagnosed by someone so knowledgeable in his field and who was willing to break it down step by step because hardly anyone else has that.
The first two appointments were like I was living someone else’s life. How could this be me? I served in the US Army—active duty for 5 years, reserves for 3. I had just graduated college with an Honors degree in the top 10% of my class. I was employed full time as a child abuse and neglect investigator, and I worked extremely hard and long hours. Obviously, that was the reason I was so tired all the time and stress can make your hair fall out in chunks, right? Those little red dots I get when I’m in the sun too long are just the start of a sunburn. I’m a veteran! Of course, all of our joints are painful all of the time, right? I was in denial until my mom pulled out this little notebook she used for all of my grandfather’s, lovingly known as Poppy, cancer appointments. Then I realized this is very much so real. I have lupus and I will have lupus for the rest of my life.
Having a chronic illness is difficult because you never know when it’s going to rear its ugly head and ruin plans, your day, whatever you just so happen to be doing. I’m lucky to have two very good friends who also struggle with chronic diseases, so they get it. Jamie, my first phone call after I got my lupus diagnosis, was diagnosed with lupus not too long afterward. We are lupus sisters and promised to always help the other to get through this. My best friend, Krystle, has fibromyalgia and we talk on a daily basis to help each other get through the day. Both of these women are women I look up to. Jamie just graduated with her Bachelor’s and is a single mom, handling things all on her own. She is amazing. Krystle has a Master’s but is currently staying home with her two young children and a preteen. I tell her all the time, I have no idea how she does it. She’s superwoman.
Another huge support system in my life is my mother. She is a nurse, and I joke I owe a lot of money to my personal 24-hour phone-a-nurse line. She deals with me when I stress out over little things and tells me when I should get seen for the big thing. I’m incredibly grateful for everything she does for my family. My sister-in-law and her family help me out so much too. I am so incredibly grateful to be surrounded by supportive friends and family.
I have three pieces of advice for those are who are also fighting lupus. The first one is to find a partner or spouse who is supportive. Find one who goes to the doctor’s appointment (when they let them!) and asks questions and/or takes notes. The one who does research to try and understand what you’re going through a little bit better. The one who doesn’t tell you that you’re lazy when you need to rest all day, but rather brings you food, snacks, and water. Having a supportive partner makes things so much easier on you. Even if this is just your best friend or your parent, you need one.
Most recently, I’ve started having the scariest symptom yet: seizures. They started after the birth of my second child, my 2-year-old Jameson. My first attack was myoclonic, which mean I had jerks and spasms all over my body I had no control of. Even though I know it must have scared Jake, my husband, to death, he remained calm, which kept me calm, and we made it through. I honestly don’t know what I would do without him.
My second piece of advice is to find the right doctor that fits you. If you don’t like your doctor and your doctor doesn’t listen to you, there is a chance something could be missed. Lupus is quick and sneaky, one visit everything can be great and the next, it’s complete chaos. This goes not only for a rheumatologist, but any specialist you need to have involved. They should be talking to one another. If you don’t like one member of your care team, don’t be afraid to ask another doctor for a recommendation. I had a great rheumatologist until I moved to Arkansas. I have lived here since 2017, and I am still struggling to find one that fits with me. A doctor who doesn’t try to tell me my lupus is something else or gets upset because I am educated about my diseases. I hope you never hear the worst one yet, my symptoms would just go away if I would lose some weight. You know your body and you know it best. Keep trying until someone listens.
My third piece of advice is to find a great therapist. You may not realize it, but we all mourn the person we used to be. I especially do because I feel like I was able to do so much more with my 10-year-old daughter than I am with my 2-year-old son. I mourn hobbies I use to have like long-distance running in the sun, reading a long book (migraines yuck), and going swimming in my mom’s pool. I hate I can’t remember words a lot of the time. I especially hate my anxiety and depression have seemed to increase. Talking this out with someone who can give helpful, professional advice really has helped me.
Above all, don’t forget we are fighters; we are warriors. Every day we wake up and get out of bed is a battle won. Somedays will better than others, try not to overdo it on those days. Don’t be ashamed to ask for help (I’m still working on this one, ask my husband haha). Above all don’t think you are alone! There are support groups on Facebook, on websites, and some places even have local meetings. We don’t have to fight alone!”
This story was submitted to Love What Matters by Erin R. Morris from Pocahontas, Arkansas. You can follow her on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more inspiring stories about battling chronic illness here:
‘There’s a woman who posts beautiful things, and the one I come home to, who ISN’T okay.’ He accused me of being a fraud.’: Mom diagnosed with Lupus, multiple chronic illnesses, ‘We’re worthy of living our best lives’
‘I was sleeping 16 hours a day. I felt someone squeezing my lungs every time I took a breath. ‘You’re fine, just go home and rest.’: Woman battling Lupus urges ‘you’re capable of crushing every obstacle in your path’
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