With Multiple Diagnoses, Self-Advocacy is a Vital Tool

By Kirsten Ballard

When her pain was at its worst, Nisha Ray couldn’t even stand being hugged by her children.

“I’d be like, ‘Oh my gosh, you have to get off,’” she recalls of the time when her pain and symptoms were increasing, and no one could give her a good answer as to why. “Just the touch would make my body feel like it was vibrating.”

Pain has changed Nisha, 47, as a person. Thirteen years ago, she crashed into the back of a garbage truck. Prior to the collision, she experienced pain from fibroids and anemia, but she remained active—playing on the floor with her kids and never passing up a snowball fight.

“I went from walking five miles a day to not being able to walk at all,” she says. “I could barely walk from one end of my living room to the other.”

The car crash caused a portion of Nisha’s spine to degenerate. She developed a nerve root disorder in her neck and has limited mobility. Turning her head too far causes her fingers to tingle and lose sensation.

Three years after the crash, she started experiencing new symptoms. She had shortness of breath, her heart was beating out of control, and her GI tract wouldn’t calm down.

Doctors found an anomaly on her liver. She believes it was connected to the medications she was on following the accident. No one explained to Nisha the potential side effects of taking certain medications or how one medication may interact with another.

“I felt like I couldn’t trust [what I was being told]. Now, I have to research everything, figure out what the side effects are, and be on top of it,” she explains. “I was a single mom to small kids. If I took a pill and woke up later, the house would be destroyed.”

With continuing, worsening symptoms, she applied for Social Security benefits and was denied.

“I went from working full-time to not working and on food stamps, a single mom, sick, unhealthy, denied benefits, trying to figure my life out,” she says.

ADVOCATING FOR HERSELF

Nisha learned early on that she had to speak up for herself when it came to getting help for her pain.

“Sometimes you’re not heard and you have to advocate for yourself,” she says. “A lot of times with us women, we don’t want to be over-assertive or aggressive, so we try to get along. No. Know what’s normal for your body.”

Over the years, she’s fired doctors and physical therapists after being ignored, gaslit, or belittled.

“I’m brown-skinned. So if I go somewhere and you’re looking for my skin to be red and inflamed, how are you gonna see red on my skin? They think, ‘Oh, it’s not red, then it’s not bad. It’s not inflamed.’”

She also has been profiled as a drug seeker, which Nisha, who doesn’t take any opioids, finds grimly funny.

She had to learn to listen to her body.

“There’s no outrunning [pain], but I’m trying to decrease it and slow down the progression,” she says. “If it means I have to sit down a little more because I’m still in pain, then I need to sit down. I’m a little more tired, but I’m still up and I’m around.”

A CONTINUED SEARCH FOR ANSWERS

At one point, Nisha’s primary care doctor sent her to see a rheumatologist to determine if some of her pain might be related to factors other than her car crash.

Before her appointment, Nisha researched alternative and more natural paths for fighting inflammation in the body and shared with her new doctor her preference for natural care, but her preference was dismissed.

Nisha left the appointment with a diagnosis of fibromyalgia and osteoarthritis, and nothing but a pamphlet.

The conditions cause pain and stiffness in her lower back, legs, knees, shoulders, and arms. She experiences heightened pain and sensitivity to touch, throbbing spasms in her legs, itchy skin, dry eyes, and upper back pain. Her treatment for the conditions includes physical therapy, supplements, and medications such as gabapentin.

“I have times when I’m unable to walk for hours,” Nisha shares. “The random symptoms are the hardest, because you never know when they are coming or how long they will last.

“My social life and the way I show up for my kids declined. I had to find new ways to show up. I had to learn how to ensure I make an impact when I can show up.”

Nisha had experienced years of fibromyalgia-related pain before receiving a diagnosis. After feeling dismissed by the provider who identified her fibromyalgia and osteoarthritis, she had to seek out new doctors to learn what those conditions were, how they would affect her, and what her treatment options were.

She also shares that, during her years as a warehouse worker and the times that her health caused her to be unemployed, she was treated by doctors as if she didn’t want to work.

“It’s just been a process. Learning how to advocate for myself, learning how to research,” she explains. She tries to limit medications and utilizes essential oils, transcutaneous electrical nerve stimulation (TENS) units, and other modalities.

A NEW SETBACK

In 2022, Nisha began experiencing pain in her leg. X-rays showed nothing—so she was shipped off to physical therapy and, once more, dismissed.

She felt minimized by the doctor who told her that her knee pain was related to her weight, and the physical therapists who said she should work through the pain even as she felt the treatment was worsening her symptoms.

“When you’re Black and you deal with pain, you are ignored,” she says.

Finally, Nisha found a new orthopedic doctor who ordered an MRI. The doctor found a lesion on Nisha’s weight-bearing joint. She was diagnosed with plica band syndrome and was scheduled for surgery, but she has been told she’ll always have knee pain.

“The knee threw everything back off,” Nisha shares. “I had four or five years where I had pain, but manageable pain. Once my knee got thrown off, it felt like all of my symptoms flared back up.”

FINDING PURPOSE

When Nisha’s knee pain began and her symptoms flared in 2022, she had to step away from a lot of what brings her joy.

“I went from being active in my community and working full time and in the presence of my kids and grandkids to not being able to do anything,” she says. “I started painting more, and I think I read a book every day.”

Now, after her plica band surgery and subsequent physical therapy helped ease the knee pain, a good day for Nisha is a seven out of 10 on the pain scale. She can walk to her daughter’s house and play with her grandkids. She can get back to work—she currently works for a New Jersey senator.

When Nisha’s pain rises above that baseline, she has to make accommodations elsewhere in her life. A high pain level means that chores get left undone, or that she misses out on work, volunteering, and community events.

“My oldest daughter is able to help out if I need groceries, and my kids all know how to cook,” she explains. “If nobody is around to do that, we’re eating takeout!”

When her pain level allows, Nisha is very active in her community. She is president of Arts Guild New Jersey and was appointed to her county’s Women’s Advisory Board. She’s involved in a women’s outreach ministry, providing diapers to single moms.

“The pain can be overwhelming, and it discourages us; it can depress us,” she explains. “So finding things that are outside of yourself, ways to give back in the community, ways to practice faith, painting, exploring different recreation activities, it can help ground you.

“When I’m serving someone else, I’m not focused on the things that are going wrong in my life, I’m just doing something that makes me feel good. And it brings me peace. So that peace that I get from serving, it sort of bridges that pain.”