Sometimes we forget that people with Chronic Pain have pain due to their primary diagnosis of an auto-immune disease. Lupus is one of those diseases that can cause chronic pain. This interview is with my brother, Aaron, who is on his way to thriving while living with Systemic Lupus Erythematosus (SLE) aka Lupus.
Can you share about your symptoms, and your experience of how you were diagnosed with Lupus?
I first started noticing symptoms back in 2008. It started first with skin rashes, red skin, and the butterfly rash on my face. It was a slow progression of symptoms until last winter. In 2013, I went to my primary care doctor (in Texas) to discuss my ears, which had been ringing for 2 1/2 years. I also showed him my Malar (Butterfly) Rash, and complained of nausea and dizziness. The doctor said that my ears were a little bit inflamed and “Well, it is allergy season.” He said that the Butterfly Rash was from the sun. He then told me that the nausea and dizziness were from panic attacks. I told him that this did not feel like anxiety. All that he ended up doing was he cleaned out my ears and sent me home.
In 2015, I was back in Minnesota, and I had started a new job. The pain in my joints had increased significantly. I was seeing a psychiatrist and she said that I was depressed, and that was why my joints hurt so bad. I then went to my new primary care doctor and showed him how swollen my joints were, how they cracked and popped, and that the pain was unbearable. The doctor decided to run tests to check for connective tissue diseases. The first test that he ran was an Anti-Nuclear Antibody (ANA) test. That came back positive with a speckled pattern, which was indicative of SLE. The symptoms of Lupus mimic other diseases and diagnoses, so it takes a while to rule everything out. They have to use bloodwork with a combination of your symptoms to make a formal diagnosis. I was actually diagnosed with unspecified diffuse connective tissue disease before being diagnosed with Lupus.
What was the treatment after your diagnosis?
Well, they referred me to several different types of doctors: ENT, audiology, rheumatology. I was on the waiting list and couldn’t get in to see the rheumatologist for several months. The good ones are hard to find, and there seems to be a shortage of them. My symptoms got so bad that I had to go to the emergency room, and they said I needed to get in right away. I got a referral to a different health network so that I could get in to see the rheumatologist as soon as possible. I’ve been on a lot of different prescriptions to try and manage the flare ups: Zofran, Plaquenil, Prednisone, Zanaflex, Methotrexate, Folic Acid, and B12. I will be starting on Benlysta soon. I am keeping my rheumatologist right now in Minnesota because he knows my history, and knows Lupus. I come up from Texas for my appointments with him.
What other things are you doing to manage your symptoms?
I have to be careful because I am photosensitive and I live in a warmer climate. So, I wear 100 SPF sunscreen, and shirts with built-in sunscreen. I have gone to a completely organic diet which helps with my overall health, digestion, nausea, and energy levels. I don’t eat sweets. If I eat crap food, I just feel more like crap. I have started to stretch every morning. As much as I hate taking the time to do it, it really helps. I also take supplements. I take probiotics, and a high-quality liquid vitamin. I also like to drink kombucha. Every morning, I make a smoothie in my Nutribullet. I don’t overstress my body, so I enjoy mild exercise and don’t take it too far. Instead of running and lifting, I go on a relaxing walk. De-stressing is sometimes hard, but very critical, because stress can cause flare ups. I have to really take care of myself and have a good balance of the right kind of diet, and the amount of exercise that’s right for me.
What is your favorite way to de-stress?
How has your social life changed?
Before my diagnosis, I didn’t know that I was so sick. It is mostly an invisible illness. One of the hardest things is that people will look and see skin rashes on the outside, but don’t know what’s going on inside of me. It’s almost like they don’t believe that I’m sick. I have had friends make fun of me. I have had people call me “sissy”, and ask if I need a Midol. I feel left out, and left behind sometimes too. Most of my friends are very active. I only have a certain amount of energy, and I have to spend it on chores. I recently had a situation where I had some friends who wanted to stay up all night and go fishing at 4 AM. I couldn’t join in and they didn’t understand what I’m going through. I’ve had friends say “I thought it was treatable, you’re still sick?” I respond with “It’s treatable, but it’s not curable. It’s chronic and it doesn’t go away. I still have flare ups. And sometimes the meds make me feel worse than the actual Lupus. It’s a constant double edge sword and battle. Then there is the dating aspect. I have lower self-confidence, so I’m constantly trying to figure out if I should tell them that I have Lupus. I think “who’s going to want to take care of a person with Lupus?”
When I was younger I imagined that if I ever got sick, people would care. I’ve needed help with laundry, and taking care of my kids, but people have been very non-committal about helping with daily tasks. Everyone wants to know what’s going on with me, but they put up their own social barrier when it comes to helping.
What is one thing you wish you could change about the medical community?
What I wish for most is that there would be more awareness and training for doctors about autoimmune disorders, specifically, Lupus. When I was first seen for my symptoms, they just wrote it off as anxiety or skin irritation. They could’ve ordered a basic blood test and figured out that I had Lupus a lot sooner than they did. I could’ve started treatment years before my actual diagnosis. If there was more awareness, they could also make referrals to the organizations that are providing support for Lupus patients.
How have your symptoms improved since you started your treatment and self-care regimen?
Well, I still have chronic joint pain daily. But the damage to my internal organs has slowed down. My flare ups are not as bad. And my anxiety is 100% resolved.
How do you think your experience with Lupus as a man has been different than the experiences of women with Lupus?
Of the estimated 1.5 million people in America that have Lupus, only 10% of us are men. It has been hard to find and connect with other men that have Lupus. It’s a very lonely feeling. I am part of a support group with my local chapter of the Lupus foundation of America, and I am the only guy in my group. I think this is a big barrier because men need emotional support just like women do. In fact, we may need even more. I felt like I had to be tough and strong, because of what the general idea of a man is supposed to be. But my career has been stripped away from me, and it has made it nearly impossible to provide for myself and my family.
What advice would you give a guy with Lupus that would be reflective of what you have learned on your journey so far?
First of all I would say you’re still man, you’re just sick. You may feel like you’re being stripped of your manhood, but you have to remember that you’re stronger than most men, because you’re fighting a chronic disease. Don’t be too hard on yourself. Try and accept the fact that you can only do what you can do. Remember that life isn’t over, you just have to adjust to a new lifestyle. Try and learn new hobbies and activities.
Thank you so much for the interview, my brother. Do you have some good resources that I can share?
Anytime, I hope that my story will help other men who have Lupus. The Lupus foundation of America has a lot of good information. ButYouDontLookSick.com has some good info too (Jen here – I told him about this blog and the Spoon Theory! That’s what big sisters are for!). Here is a great list of the top 10 things you should NEVER say to someone with Lupus (the one I hate the most is “What’s that on your face?”). I also like this list of the top 12 things not to say with people who have chronic illness.
Jen’s addition: you can also go to our Resources page for additional information.
Pain Camp is a safe place to share your thoughts, experience, strength and hope. Are you a man who has been diagnosed with Lupus? Are you a family member or friend of a man with Lupus? What has your experience been like?