“With good care, PNH is something you can live a long life with. It’s not nearly as life threatening as it used to be,” says Robert Alan Brodsky, MD, a professor of medicine and the director of the division of hematology at Johns Hopkins Medicine in Baltimore. That said, learning you have a rare condition that you’ll likely have to manage for the rest of your life can bring on a flood of emotions, from bewilderment (Why me?) to anger, fear, and worry about what’s next. Should you put off life changes like career moves? What should you expect? Can you still have kids? Emotionally, a PNH diagnosis can be quite a blow, explains Carlos de Castro, MD, a professor of medicine at Duke University School of Medicine in Durham, North Carolina. “It’s shocking to most people. They’ve never heard of it and never seen anyone with it.” Many people feel lousy for months or years before doctors figure out what’s going on, adds Dr. de Castro. “Sometimes they’ve been told they are going crazy.” So in some ways, finding out what’s going on — getting a diagnosis, a name to pin to all the symptoms and health issues you’ve been living with — can also be a big relief. But how should you handle all the other emotions that crop up? Start with these steps.
1. Ride the roller coaster.
As with the diagnosis of any chronic illness, big emotional swings are completely normal and should be anticipated, according to the American Psychological Association (APA). You may feel accepting one day and furious or stricken by grief the next. As much as possible, remind yourself that these swings are normal and will likely lessen with time. Managing PNH takes vigilance, though, so resist the temptation to ignore the diagnosis. The APA says the best way to cope with your feelings is to face them head-on. If you feel you would benefit from additional support beyond your doctor, family, and friends, try looking for a psychologist who may be able to help. Check out the APA’s Psychologist Locator to find one near you.
3. Fight anxiety by educating yourself.
According to de Castro, some of the most overwhelming anxiety people diagnosed with PNH experience relates to “the fear of the unknown.” Learning all you can about PNH can help dispel some of that. De Castro gives newly diagnosed patients materials about the illness and steers them to evidence-based resources, such as the Aplastic Anemia & MDS International Foundation (AAMDS), where you can find PNH-focused videos, expert interviews, podcasts, downloadable patient guides, and more. Check in with your doctor from time to time to ask about new research and findings related to PNH. Or try setting up alerts for PNH through a search engine, such as Google, to have the latest news stories emailed to you on a regular basis. For Judith, a 70-year-old administrator, mother, and grandmother from Salina, Kansas, education and awareness were her tickets to relief from anxiety when she was diagnosed with PNH in 2006. It had been a two-year quest for answers, and the diagnosis gave her some closure. “But it also left me with many questions,” she says. Her solution was to find answers in reliable, scientifically backed sources, including her PNH specialist at the National Heart, Lung, and Blood Institute in Bethesda, Maryland. PNH chat room friends also helped Judith stay informed, although she stressed that she uses only scientific, evidence-based information. A public health researcher who happened to be in the group helped a lot, she recalls, “So when we’d find something interesting, like a journal article, she’d agree to check it out and we’d talk about it.” This attention to facts and science is important, Judith emphasizes. PNH is a serious illness, and dabbling in dietary supplements or unproven approaches could be a dangerous decision; for example, serious interactions could occur.
4. Connect with others.
Because PNH is so rare, you may never meet another person with the illness. It affects slightly more than one out of every 1 million people, according to Johns Hopkins Medicine, so being diagnosed with it can be extra scary and isolating. Connecting with others who have been diagnosed with it can be helpful. You can find support groups on the AAMDS Foundation website. Judith recalls the relief she felt from communicating with others in the basic chat rooms that were available back when she was diagnosed. Just sharing stories and information was enormously helpful, she says. And don’t be too shy about asking family and friends to help you with demands on your time and energy. Judith loves to bake but remembers many holiday get-togethers when she had to pull back. “It’s always a negotiation,” she says, giving some things up so she has the energy to do others.
6. Cultivate resilience.
Being able to bounce back and find solutions and a way forward despite obstacles and setbacks can help enormously when dealing with a chronic health condition. For example, when Judith couldn’t muster enough energy to stand at her bathroom mirror to apply her makeup, she bought a bench to sit on and get the job done. Years later, she made a similar calculation when giving up playing the cello, which she loved. It was just too hard on her physically, knocking the wind out of her. But instead of giving up the music she loved to take part in, she joined a choir instead. And when she found it too tiring to stand and sing, she was given permission to sit on a bench while singing.
7. Set short-term, achievable goals.
Even small wins, such as making a phone call to a close friend, wrapping a present, or increasing your daily step count can boost your mood. It’s important to feel you’ve accomplished something each day. Don’t discount the power of this approach for feeling positive about things, says the APA. There’s a lot for people with PNH to be hopeful about, emphasizes de Castro. The management of PNH is very individualized, but activities that were once declared too risky for people with this illness — pregnancy, vigorous exercise, drinking alcohol — are back in play, thanks to newer medications. And even more exciting treatments are coming down the pike.
