A Journey to Acceptance and Advocacy
Julie Morgenlender always wanted a dog. But it’s not that easy when you’re living with multiple concurrent diseases that affect your ability to hold down a job, navigate stairs, or even sleep comfortably. “This guy pulls at the leash, and I’m in pain,” she says, referring to Todd, the terrier/hound mix she recently fostered.
When Todd moved into Julie’s Boston-area apartment, he went on a strict gluten-free diet to accommodate Julie’s celiac disease. “I’m doing better than I would have thought,” Julie says soon after taking in Todd. “He sleeps a lot.”
They both do. In addition to celiac disease, Julie, 42, also lives with Hashimoto’s disease, an autoimmune condition that makes her thyroid sluggish and causes fatigue, joint pain, and menstrual irregularities, as well as undifferentiated connective tissue disease (UCTD), which also causes joint swelling and achiness.
Julie spent decades battling health insurance companies and being misdiagnosed; she was even told she “wasn’t disabled enough” for benefits. “A doctor told me, before I was ever diagnosed with anything, ‘You need to stop coming in. There’s nothing we can do for you,’” she recalls. “And unfortunately, I did stop for several years.” But not forever. Because, as she says, “Sometimes I may give up temporarily, but I’ll never give up permanently.”
A series of misdiagnoses
Julie first started seeking medical attention when she was plagued by joint pain in junior high. Tendonitis, carpal tunnel, and IBS were among a long string of misdiagnoses she received. Julie now realizes that she’s probably been living with celiac since childhood, and suspects that not catching it sooner gave rise to some of her other complications.
Since puberty, Julie would experience irregular menstrual periods she says “can last for weeks.” She had to miss her own surprise 18th birthday party after the bleeding was so heavy she blacked out in the bathroom from anemia, and she was still bleeding so badly days later that she nearly missed her high school graduation.
She also dealt with unexplained joint pain and was extremely fatigued throughout college and graduate school. “It got so severe I questioned whether I was dying,” she says.
When she was 23, a rheumatologist finally diagnosed her with UCTD, and while Julie says that was somewhat correct, “it wasn’t even close to the full picture” when it came to her complicated health problems. She wouldn’t be diagnosed with celiac until her 30s.
“When you have one autoimmune disease, you’re likely to have more,” she says. “Complicated cases just aren’t as unusual as people want to think. But because they’re complicated, people don’t want to talk about it, and because no one talks about it, people think it doesn’t exist.”
A slow deterioration
Julie was in a PhD program for linguistics at the University of California, Los Angeles when she was diagnosed with UCTD. “You go through stages of grief with this stuff,” she says. “I thought I had accepted that the way I felt was permanent. But once I found out it was really permanent, and most likely will get worse, I went through it again.”
There weren’t many solutions for the constant fatigue, brain fog, and other symptoms she experienced daily. “I was told to avoid stress,” Julie recalls. “I was in a PhD program; I thrived on stress.” She plowed through and finished early, then moved back to Boston.
“Some mornings I’d wake up so exhausted I couldn’t even reach over and turn off the alarm,” Julie says. One boss asked if she could give more notice before she used a sick day—“as if I could predict when I would feel ill,” Julie says. Another boss told her she was lucky to be able to park in handicapped spaces. “I told her I’d rather be able to walk across the parking lot, and she never said anything like that again,” Julie recalls.
At one point, she took a break from work. She exercised more and ate and slept better, despite her persistent sleep apnea. When she went back to work, her health was better than it had been in years, but then she began to backslide. Working from home several days a week had helped, but when she switched jobs and wasn’t permitted to work remotely, Julie eventually reached a point where she couldn’t keep up. “Once I got that sick, I’ve never been able to work full time again,” she says. “Anytime I try to work more than five hours a week, I get this terrible slide in symptoms—and some weeks, even five hours is more than I can manage.”
Finding what works
After years of feeling stigmatized, Julie found a therapist who has experience working with clients with chronic illness. “Our lives change when we get diagnosed with a chronic illness,” she says. “We lose things, we lose relationships, so you need someone to talk to about all that.”
Julie also discovered that blogging anonymously was a great outlet for her feelings. “I write about being angry that I can’t go to my friend’s wedding. Or that I’m having these symptoms and wondering whether I should see a doctor,” she says. “It has been cathartic.” Blogging has introduced her to a community of people living with chronic illnesses and pain, a tribe she hadn’t known she needed.
People who don’t live with a chronic condition may not realize the added layer of complications: apartment hunting (triple level walk-ups are a no), work, maintaining any kind of social life. Julie says she’s constantly cancelling on friends, and dating can be tough. “A lot of people just can’t handle the idea of chronic illness,” she says. “On the other hand, when someone does handle the chronic illness stuff well, you know there’s something there.”
Do what you can, when you can
Julie continues to advocate for others even as she searches for answers to her own medical issues. “I’ve accepted that I will never be what you call healthy. But I have not accepted that there’s nothing I can do about that,” she says. She even published a book, The Things We Don’t Say: An Anthology of Chronic Illness Truths, in 2020. It’s a collection of non-fiction stories that took her six years to write because she couldn’t work on it for more than an hour or two at a time. “I still did it,” she says. “It just took longer.”
She plays the ukulele (it’s more forgiving on her joints than other instruments), cues up podcasts, volunteers on the board of directors for the Bisexual Resource Center, and crochets and knits. “Knitting and crochet have been great for me because if I have no energy, I can still produce a useful thing,” she says. She will often donate what she makes, which is mostly blankets and hats lately.
And although she has to make some accommodations, like not using very thin or very thick needles, and avoiding certain stitches her fingers aren’t nimble enough to make, she finds it relaxing. When you have a chronic illness, she says, “You have to work with your body. You have to do the stuff you can do when you can do it, and accept when you can’t.”
Of course, Julie doesn’t like to accept “can’t,” finding workarounds whenever possible. That’s how she ended up fostering Todd, who was successfully adopted and is happy in his new home. Julie is happy too, but now, she says, “the apartment is so quiet and empty.” That might not last too long—after all, there are lots of dogs looking for homes in the Boston area, and Julie now knows she’s up for the challenge.