RISING TO THE OCCASION
The experts tell us what helps get you through a difficult medical diagnosis
“It was during a family trip to the Cayman Islands when I noticed that after walking for a few minutes, my right foot would drop. Basically, it would lose strength and instead of transitioning from heel to toe when I took a step, it would flop flat on the ground,” says Toronto-based editor Hina P. Ansari, who quickly dismissed this strange occurrence as a side effect of being out of shape. But after casually mentioning it to her father, a surgeon, Ansari ended up seeing a neurologist, who immediately referred her to a specialist.
This was back in 2010. While Ansari waited for her specialist appointment, she spent months visiting other doctors trying to get a diagnosis. “They found a cyst on my spine but couldn’t conclude it was causing the immobility. As the months progressed, I got worse. I was losing my balance and falling a lot, plus I had nerve pain,” she says. By the time she met with the neuropathy specialist, she says she felt deflated. “I really didn’t think this examination would be any different than the ones I’d had with other doctors. However, he did repeated nerve tests and after that it was explained to me that I have multiple sclerosis (MS).” It turns out Ansari had been living asymptomatically for years, and MS was the culprit behind her recent constant pain and numbness.
Ansari, now 49, remembers receiving the diagnosis, and says she was matterof-fact about it at the time, almost void of emotion. “I wanted to know next steps. I filled my calendar with myriad doctors’ appointments and treated them the same way I would a business meeting—what’s the problem, how do we solve it. It was a couple of months later when all the emotions I had bottled up came out and I just cried for days.” That’s when she says she decided to get her affairs in order, get as active as she could to help her muscles, and do some travelling before her mobility started to worsen.
Dr. Madeline Li is a psychiatrist in the department of supportive care at the Princess Margaret Cancer Centre in Toronto. She says there are a ton of common feelings people have when they receive a diagnosis—as many feelings as are there are diagnoses. “Feelings can range from shock, sadness, anger and guilt to sometimes even relief, if they’ve gone through a long period of unexplained symptoms and tests. Worry about the impact on their family and life course and goals, fears about treatment and suffering, existential distress about changes to their identity as a ‘healthy person,’ as well as the possibility of dying are common,” she says. The other thing that’s shared when it comes to receiving such a diagnosis is that there isn’t a one-size-fitsall solution. “All coping styles are healthy so long as they work,” Dr. Li adds. If you or someone close to you is facing a tough medical diagnosis, rest assured there are lots of ways to help you cope and deal with the unknown.
"I approached my doctors' appointments like business meeting with a 'wha's the problem? how do we solved it?' attitude."
Avoid the “tyranny of optimism.
” Dr. Li says it’s common for you and others to focus only on the positive, and believe that you will get back to normal. “Illness changes you. Expect that there will be change and focus on adapting to your “new normal” instead.”
Be present.
Live well and more fully now, says Dr. Li. “Facing a life-changing illness and not knowing what the future holds can motivate some people to appreciate life more, repair relationships, engage in more meaningful activities and reprioritize the work/life balance.” She adds that adopting a “stay-in-the-present” way of thinking can really be beneficial. “For example, if a patient who has finished cancer treatment is afraid of a recurrence, focusing on the fact that right now, in this moment, we know there is no cancer can help the patient move forward. Live more fully in the present so whatever happens in the future you’ll have enjoyed life and may have fewer regrets.” Consider mindfulnessbased stress reduction (a kind of meditation that helps you deal with your thoughts and stay present) to help hone this skill.
Ansari says a piece of major advice she took to heart was to try not to stress over what she couldn’t control. “It was challenging for my Type A personality, but I did my best to focus on what I have instead of what I am losing, and tried to pick my battles so that I could take that energy and redirect it to myself, to living in the moment and enjoying life as best I can.”
Share your feelings.
“MS is seen as an invisible disease because, in the beginning, you don’t look sick from the outside. However, inside, you’re pretty much falling apart,” Ansari says. “I had to explain to people who weren’t familiar with the disease that just because I don’t always walk with a cane (I do intermittently) it doesn’t mean that I can run (I can’t) and walk and climb stairs quickly ( I can’t).” She also found it difficult to talk to people who immediately felt as though her diagnosis was a death sentence. “A dark cloud would hover over us when we talked about it, and I needed to snap out of it (and have them snap out of it). I tried to be positive and open to questions and concerns, and focus on all that I have, although sometimes it’s healthy to walk away from negativity, too, and limit your interactions with people who have a more negative outlook. It was important to me to let people know that even though I have limitations, I’m still able to do certain things. I’ll be okay.”
Do what’s best for you.
It goes without saying that once a diagnosis becomes public knowledge, input from others will come pouring in. “Just understand that those who are giving it are doing so with the best intentions,” says Ansari. However, only you know what’s best for you; only you know what it feels like to live with this challenge. Only you will know best how to continue to live, day in and day out.”
"Not knowing what the future holds can motivate some people to appreciate life more."