People in good health often see disease only through the lens of celebrity. We know more about Parkinson’s disease thanks to Michael J. Fox. Breast cancer was dinner table conversation after Angelina Jolie shocked the world with her double mastectomy. And multiple sclerosis (MS) was back in the spotlight last year when Jack Osbourne, son of rocker Ozzy Osbourne and his wife Sharon, shared his diagnosis in a magazine interview.
While many patients are diagnosed with progressive, debilitating forms of MS, others “look so good” you’d never suspect they were ill. "It's like it's not even there," Jack's sister Kelly Osbourne told People magazine when she was asked about Jack's illness earlier this week.
The Cloak of Invisibility
In the early stages of the disease, MS symptoms may be subtle to the untrained eye. Many people with MS experience “invisible” symptoms, including vision problems, dizziness, weakness, pain, numbness, fatigue, memory issues, and bladder or sexual dysfunction.
In Osbourne’s case, he realized he was having problems when he began losing vision in one eye. A classic symptom, optic neuritis is often the first one a patient suffers. And it may not be immediately apparent, even to friends and family.
Describing these subtle symptoms to those around them presents its own unique challenges for MS patients.
Rennie Rankin, a high school Spanish teach in Freehold, NJ who has been battling MS for 10 years, has had to cope with many invisible symptoms. “One of the symptoms that is most frustrating for me is heat-induced loss of vision. This necessitates air conditioning in my classroom, [which] is not the norm where I work” Rankin told Healthline. While her colleagues sometimes make comments about her "preferential treatment," Rankin says, “I'd gladly trade the AC for good health."
Talking about these experiences in a relatable way can help others understand. For instance, describing fatigue as feeling “so tired” could earn a patient the label “lazy.” Instead, comparing it to the feeling of wearing a lead suit might make it easier to understand.
When she was newly diagnosed, Rankin didn't realize that saying she felt 'pins and needles' wasn't enough. She learned to describe the sensation more accurately, "as if the pins and needles are sticking me from the inside out".
The National Multiple Sclerosis Society has a publication designed to help people with MS share their invisible symptoms with family, friends and caregivers.
Honesty Is the Best Policy
Having an honest and open dialog with doctors is key when living with a chronic condition like MS. Even though neurologists are trained to identify and measure many invisible symptoms, unless they are informed, they won’t be able to help manage them.
For example, bowel and bladder problems are symptoms a neurologist can only ask about. Unless a patient is honest, he or she may suffer needlessly or develop more serious complications. Not being able to empty one’s bladder completely can increase the likelihood of infections, and chronic constipation can lead to nutrient absorption issues.
Invisible MS symptoms can not only be painful for patients, they can also cause a frustrating sense of isolation.
Celebrities like Jack Osbourne, Ann Romney, and Clay Walker might appear unaffected on the outside, but no one else can know their stories without walking many miles in their shoes.