Deciding When to Share a Diagnosis
- “Buffy the Vampire Slayer” star Emma Caulfield Ford, 51, was diagnosed with Multiple Sclerosis (MS) back in 2010, but didn’t open up publicly about her diagnosis until 10 years later when she nearly fainted at work on a hot day.
- Multiple sclerosis (MS) is a disease that impacts the central nervous system, causing numbness or tingling in the limbs. Although there is no cure for MS, several treatment options can help manage symptoms.
- Some people battling a serious disease like MS are open to sharing their experiences as much as they can, while others prefer to keep it to themselves. SurvivorNet experts say both approaches and everything in between are valid.
- Patients may choose to keep a diagnosis to themselves for a myriad of reasons, such as a wish to maintain a sense of privacy or normalcy or to avoid stigma.
Caulfield Ford, who learned she had MS in 2010, thought her diagnosis would put a damper on her acting career, so she chose to keep it to herself and her loved ones for many years.
Read MoreRecounting her initial thoughts after learning she had MS, a chronic disease of the central nervous system, she explained to People, “I was like, ‘Oh my God, what’s going to happen? What am I going to do?’View this post on Instagram
“So I told no one, not even my sister. There are just too many reasons people don’t hire you as it is. I didn’t need to give them any other excuse.”
Caulfield, who is married to actor Mark Leslie Ford, admitted to keeping her diagnosis “really, really, quite” until 2020, with her husband being the only one who knew.
Her secret remained undisclosed to others until August 2020, when she was working on set of Marvel Studio’s WandaVision TV series in Los Angeles on a very hot day.
Caulfield, who was acting as Sarah Proctor/Dottie Jones, explained, “We were all in a sort of hot box. I started feeling dizzy and faint. I was like, ‘My body can’t take this.’
“I was putting myself under too much physical duress, being out in the heat and breathing the bad air.”
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The extreme heat’s toll on her body left her feeling exhausted for a few weeks after.
She recounted to People, “I was like, ‘I can’t be afraid anymore. I have to tell the truth. It’s not good for my health.'”
As for how she first opened up about her diagnosis, she decided to tell her friend and film producer Jac Schaeffer about it. Caulfield noted how Schaeffer was “kind and sweet” when she opened up, later adding how “everyone was incredibly supportive.”
View this post on Instagram
According to People, which interviewed Caulfield Ford a few months back, the actress has had “no active lesions” this past year in the series of MRIs she received.
Caulfield Ford, who says she now stay out of the sun and avoids excess heat, explained, “I’m stable and I’ve made it a huge priority to do things so I stay that way. I’m dripping sweat in 20 minutes on that thing [she said she works out on a vibrating workout machine daily].”
She also admits at times she may experience a sore back and wonders if it’s MS or that she’s over 50.
As for one of the reasons why she “decided to go public,” Caulfield said it’s “because if someone can recognize themselves or gain some inspiration from my experience, that’s wonderful.”
In an earlier interview with Vanity Fair, Caulfield Ford said her multiple sclerosis symptoms worsened in 2010 when she recalled one morning feeling like there were “a million ants crawling” on her face.
Her diagnosis came about after seeing an acupuncturist who suggested she get an MRI, which confirmed the disease.
Understanding Multiple Sclerosis
Multiple sclerosis causes the immune system to attack cells that form the protective sheath that covers nerve fibers in the spinal cord. The disruption leads to communication problems between the brain and the rest of the body.
Once the protective barrier is damaged, the spinal cord struggles to communicate to the body’s arms, legs, and other parts to function normally.
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The National Multiple Sclerosis Society lays out the different types of multiple sclerosis:
- Clinically isolated syndrome (CIS) is when an individual experiences a single neurological episode lasting 24 hours or less. CIS is what MS is diagnosed as until there is a second episode.
- Relapsing-remitting MS (RRMS): The most common MS among the million people battling the disease in the US, RRMS is marked by sudden flare-ups, new symptoms, or worsening of symptoms and cognitive function. The condition will then go into remission for some time before reemerging with no known warning signs.
- Primary progressive MS (PPMS): These individuals have no flare-ups or remission, just a steady decline with progressively worse symptoms and an increasing loss of cognitive and body functions.
- Secondary progressive MS (SPMS): This almost transitional form of MS progresses from RRMS to PPMS.
Common MS symptoms include balance issues, numbness, tingling in the limbs, vision and bladder control problems. Mood changes and mental and physical fatigue are other symptoms people living with MS may experience, according to the National Institute of Health.
The National Institute of Neurological Disorders and Stroke explains this disease as: “An unpredictable disease of the central nervous system, [MS] can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted.” Investigators of the disease believe it to be an autoimmune disease.
Many people fighting MS experience muscle weakness and difficulty with coordination and balance.
When to Share a Diagnosis
Some people battling a serious disease are open to sharing their experiences as much as they can, while others prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches and everything in between, are valid.
“Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explains.
Questions like “How much information should they share and with whom should they share the information?” are things Plutchik says patients need to take into consideration.
Dr. Plutchik explains, “There is no one right way to handle this diagnosis. People should do what feels right to them.”
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Dr. Plutchik stresses that those close to a sick person should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Adjusting to Life After a Diagnosis
A diagnosis, like MS or cancer, will undoubtedly upend your life in some form, but learning to cope with the onset of changes can make the adjustment easier to bear. You may notice your emotions and feelings fluctuating, ranging from high anxiety to depression. Experiencing a range of emotions and feelings is completely normal.
Dr. Plutchik says your emotions are likely to be fluid in the first few days, weeks, and possibly even months after a diagnosis.
Patients are encouraged to build a support system of people they trust to help manage these emotions during this sensitive period. Mental health professionals and support groups can also be a huge help.
Contributing: SurvivorNet Staff
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