In the spirit of World Lupus Day, I reached out to my friends at #LupusChat on Twitter to connect with people living with lupus. Lupus is an autoimmune disease, which manifests differently for different people—a key aspect of lupus is inflammation that can affect not only joints and skin, but also the heart, kidneys, lungs, and even the brain . Pauline and Jennifer were quick to connect and eager to share their stories about living with lupus.
“Lupus is wildly different for everyone,” Jennifer wrote in an e-mail to me in April. And, as I try to draw comparison’s between her responses and Pauline’s, the complexities become very apparent.
Jennifer learned she had antibodies present for lupus in 1995, during her first pregnancy. Nine years later, in 2004, she was diagnosed with Lupus, Raynaud’s, Antiphospholipid Syndrome and Sjogren’s. Her first lupus flare followed a sinus infection. Not nearly as clear cut of a path, Pauline was diagnosed in 1997, at 15. She had experienced joint pain and tiredness for a year prior, and rashes on her legs—in difference to the classic facial “butterfly rash” characteristic of lupus. Pauline presented with neurological symptoms and had seizures prior to being diagnosed. Pauline thinks her lupus may have been onset by puberty, and due to her age, doctors actually suspected that her symptoms were related to drug or alcohol use–she considers herself lucky to have a diagnosis, made on the suspicion of a physician consulting by phone outside of the city. As lupus can affect every body system in different ways for different people, delayed or mis-diagnosis is not uncommon.
1.5 million people in the US live with systemic erythematosus, commonly just referred to as lupus—most diagnosed are women of childbearing age, like Pauline and Jennifer . Pauline’s diagnosis in 1997 preceded the internet knowledge and support groups that Jennifer was fortunate to have—Pauline had unaddressed concerns that she couldn’t have children at age 15, and little emotional support was available to her:
“I remember a girl asked me ‘Can you die?’ [upon returning to school after missing 3 months at diagnosis], and I burst out crying. It was so out of character for me, because i’m quite a bubbly person.” Pauline says she was told to go sit in the nurses’ office until she calmed down, the only support offered was allowing her to take a friend. She continues, “I’m a teacher by profession, and there’s so much more support in place […] to look after the welfare and other factors affecting [a] child’s life.” Pauline says it was only with much hesitation that she joined a lupus support group around age 20. In contrast, Jennifer was diagnosed 9 years later than Pauline, and advocates that patients reach out to others for support, “Whether you go to a local support group, or online, or both, you really need to find others who are embarking upon to guide you.” She says that her local support group has been amazing, but the support she has found online is “the only place that can help me when blinding headaches wake me at 2:00 am.”
Pauline was diagnosed with kidney failure in 2010, related to her lupus—she received a kidney transplant December 18th, 2014, after years of dialysis. Pauline didn’t allow her need for dialysis to stop her: she planned her treatments to allow her to go camping, and travelled to Spain, Germany and China, visiting dialysis clinics while abroad. Through Twitter and Instagram, she said that she has enjoyed being able to be that support to people who are going through the same journey as she did regarding transplant, and mentioned an experience recently in which through Instagram, she was able to positively impact another person—as she noted during our conversation, “[your] situation renders you to adapt and change”, and she is happy to share this message with others as a patient phone contact with Lupus UK, and through social media. Now five months following her transplant, Pauline said she is happy with taking it slow, but she has recently begun swimming again, and is looking forward to joining a Rounders team, and perhaps eventually joining a gym. She hopes to return to work as a teacher, but has concerns about rejoining the school environment as education progresses so quickly.
“I’m 33 years old, and my twenties were plagued with all the things lupus threw at me,” Pauline says—in addition to lupus and kidney failure, Pauline has a blood clotting disorder that lead her to be hospitalized for 5 months in 2005, putting her life on hold just after finishing university. While she has dated, she feels like she missed much of that being so sick in her twenties. Pauline also emphasized her struggle with body image during our conversation, which can make socialization, like dating, more of a challenge. Between weight fluctuations caused by prednisone, an anti-inflammatory drug she requires for her lupus at varying doses, and hair-loss induced by her treatments which include chemotherapy, as well as the other symptoms of lupus, “i want people to know the significance of what [chronic illness] can do to you.” She continues, “My health has gotten in the way of me pursuing things—I’ll never say it’s held me back.”
Prior to diagnosis, both Pauline and Jennifer were very active. Jennifer told me with honesty how her life had changed after being diagnosed with lupus:
“I worked full-time; I was a swim official, so I worked meets on weekends and I volunteered for my daughter’s swim club, I ran 15-30 miles a week, I loved food and cooked gourmet meals and chased food trucks with a vengeance – I was incredibly busy, and I loved it. I do none of those things now. I lost my job. I can’t be on deck because I can’t be in the sun or around the kids (too many germs [prednisone causes immunosuppression]). I barely eat because it causes abdominal pain, and I’m exhausted, so I pretty much camp out on the sofa unless I’m going to doctor appointments. It is an isolating way to live. I try to find ways to be grateful, and new ways to connect with people, but some days it is difficult.”
Jennifer also reflects that her case is “extreme”, and recommends that patients “try not to get overwhelmed, because stress is your enemy. Whatever makes you happy, whether it’s yoga, meditation, cake :), that little piece of happiness in your day, find that moment and make it happen every day.”
I asked both women what they wished people knew about lupus—while Jennifer responded with how she wished people understood the variance of the disease, Pauline really moved towards how people conceptualize chronic illness and disability—“I think language is very important, ‘what is a disability?’” She thinks there is a “misconception of what a disability is. Long term conditions do fit into that category, because [lupus] is a physical condition […]”, and just because lupus is invisible, doesn’t mean that it’s not there all the time—as she is searching for work, Pauline is currently struggling with people taking advantage of how she is at home—she notes “That’s another thing about lupus patients, or people with any other chronic illness, is that they try to hide it and put on a brave face.” Disability or illness aren’t always apparent or obvious.
Both Pauline and Jennifer embrace World Lupus Day—every day, Pauline wears lupus awareness jewelry and pins, and thinks World Lupus Day is great, as “awareness is so important”. Jennifer hopes that in the future, women’s magazines will help spread the word: “[…] 90% of those [with lupus] are women, yet it is so rarely talked about in the media–but every October, out comes the pink over and over and over again—Yes, I get a little ramped up.”
While Pauline was excited to discuss medical ID and lupus awareness jewelry, at the time of her interview, she had not really considered wearing medical identification jewelry. Jennifer provided an enthusiastic, “Absolutely! Being on blood thinners and Prednisone, and having multiple allergies, I would be an immediate risk in an emergency. I wear a bracelet and update it regularly.”
We hope you’ll follow Jennifer’s self-care advice and find yourself a slice of cake to embrace World Lupus Day with :]. You can say hello to the ladies in the comments below, and connect with them on Twitter – Pauline is @81obi1, and Jennifer is @JengaPuzzle. To learn more about lupus, check out #LupusChat on Twitter.