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NATURAL POWER WORKOUT

Navigating a chronic illness during the holidays

As a doctor, I am constantly advising my patients to prioritize their own mental and physical health. Get adequate sleep. Eat healthy. Learn how to say no so you don’t collapse from exhaustion. Love and care for yourself like you do others.

I talk the talk but don’t always walk the walk — even though I know, both intellectually and physically, that self-care is critical to my well-being. When I am run down, my MS symptoms cry out for attention: left leg weakness and numbness, subtle vertigo, a distinct buzzing in my brain like a relentless mosquito that won’t go away no matter how many times I twitch and shake my head. I have become frighteningly good at ignoring these symptoms, boxing them up and pushing them away. Often, I can muscle through; other times it just hurts.

Recently, a friend challenged me to think about my relationship with my illness, to describe MS as a character in my story. This was a useful exercise. I conjured up an image of a stern teacher. She is frighteningly blunt and lets me know, loud and clear, when I disappoint her. She can be mean and scary, and I don’t really like her. But I must admit she is usually right. Still, I often defiantly dismiss her, even when part of me knows this is not in my best interest.

This holiday season, I wanted to do better. I needed to do better. So, as Thanksgiving approached, as I prepared to host 16 family members, many for multiple days, I paused to ask myself, What does MS have to teach me about self-care? I don’t like having this disease, but I do. I can’t change my reality, so I might as well benefit from the lessons MS is forcing on me. I believe they are relevant to all of us, whether we live with chronic illness or not, so I’ll share them here.

The first steps: Listen and observe

When my MS symptoms flare, it’s a message that I am tired, overextended, and stressed. I need to rest. I don’t always listen right away, but eventually I am forced to, and when I listen, I feel better. All of us can benefit from slowing down and tuning in to our physical selves. What sensations are you experiencing in your body, and what does this tell you about your underlying feelings and state of mind? Yes, we should heed our thoughts, but tuning in to our bodies takes us deeper, to feelings that might be hidden, secrets we might not want to acknowledge, a physical truth. If you don’t have a chronic illness, the messages might be more subtle — a vague tightness in your chest, a quick catch in your breath, a barely noticeable tremor in your hands — but they exist, and they signal stress.

The science is clear: the body’s stress response — though potentially lifesaving in a true emergency, when “fight or flight” is essential to survival — can be toxic in our everyday lives. Stress triggers our sympathetic nervous system to kick into overdrive in response to a perceived threat, releasing hormones such as cortisol and inflammatory molecules that, when produced in excess, fuel disease. Conversely, we know that pausing to take notice and interrupting this negative cycle of stress is beneficial. It can be as simple as breathing deeply and counting to 10. Our bodies know what’s up and let us know when we need to take care of ourselves. We must pay attention.

You are not responsible for everyone and everything

The holidays, essentially from mid-November through the end of the year, are a stress test we create for ourselves. The land mines are everywhere: more food, more drinking, more family dynamics, more unfamiliar (or overly familiar) surroundings. Personally, with my overinflated sense of responsibility, I experience a kind of dizzying performance anxiety every holiday season. I believe it is my job to make sure everyone present has a positive experience. For better or worse, I am someone who notices and feels the personal and interpersonal dynamics in a room. I sense and absorb even the most subtle discomfort, frustration, anger, shame, and insecurity, alongside the more upbeat emotions. Importantly, I also I feel the need to step in and make things better, to prop everyone up. It’s exhausting. But MS reminds me of how absurd, and even egotistical, this is. In truth, I can’t possibly care for everyone. Neither can you.

It helps to check our automatic thoughts. More than once on Thanksgiving Day, as the busy kitchen buzzed with activity and conversation, I intentionally stepped back and watched, reminding myself that I didn’t have to hold the whole thing up. Even though I inevitably slipped back into hyper-responsibility mode, these moments of self-awareness impacted my behavior and the dynamic in the room.

It’s okay to say what you need

To take full responsibility for my own well-being, I need to speak honestly and act with integrity. This means asking for what I need, clearly and without apology. Historically, I have been terrible at this in my personal life, burying my own needs in the name of taking care of everyone else’s, even rejecting clear offers of help. “I’m good, I’ve got it,” I might say, while simultaneously feeling bitter and resentful for having to do it all myself. This lack of clarity isn’t fair to anyone. MS reminds me that I need to do better.

This year, when my guests asked me what they could bring, I took them at their word and made specific requests instead of assuring everyone that I had it covered. When my mother started banging around in the kitchen at 7 a.m. with her endearing but chaotic energy, asking for this and that pot and kitchen utensil so she could start cooking, I told her I needed to sit down and have a cup of coffee first. She would need to wait or find things herself. She was okay with that. Family dynamics can be entrenched and hard to change, but clear communication can set new ways of being into motion, one baby step at a time.

I still have a lot to learn, but I am making stuttering progress, learning to listen to my body and honor my needs while also caring for those I love, or at least trying. Undeniably, I experienced some post-Thanksgiving fatigue, exacerbated by my daughter’s early-morning hockey game the next day, requiring a 4:30 a.m. departure. I felt it in my body — the familiar leg weakness, vertigo, and brain cobwebs — and, completely uncharacteristically, I took a nap.

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NATURAL POWER WORKOUT

Harvard Health Ad Watch: An upbeat ad for a psoriasis treatment

Psoriasis is a chronic disease in which skin cells rapidly divide, causing the skin to develop rough, red, scaly patches. Plaque psoriasis is the most common form: affected skin has sharply defined, inflamed patches (plaques) with silvery or white scales, often near an elbow or on the shins and trunk.

The cause of psoriasis isn’t known, but there are a number of treatment options. Possibly you’ve seen a glossy, happy ad for one of these treatments, a drug called Skyrizi. It’s been in heavy rotation and in 2020, hit number four on a top 10 list for ad spending by a drug company.

Splashing in blue water

A woman in a bathing suit sprints down a dock and jumps into the water with several friends. There’s lots of smiling and splashing. A voiceover says “I have moderate to severe plaque psoriasis. Now, there’s Skyrizi. Three out of four people achieved 90% clearer skin at four months after just two doses.”

Then, the voiceover moves to warning mode: “Skyrizi may increase your risk of infections and lower your ability to fight them. Before treatment your doctor should check you for infections and tuberculosis. Tell your doctor if you have an infection or symptoms such as fever, sweats, chills, muscle aches, or cough, or if you plan to or recently received a vaccine.”

As these warnings are delivered, we’re treated to uplifting pop music — “nothing is everything,” a woman sings — while attractive young people flail about in the water.

“Ask your doctor about Skyrizi,” a voice instructs. Did I mention a plane is skywriting the drug’s logo? I guess it’s putting the “sky” in Skyrizi.

What is Skyrizi?

Skyrizi (risankizumab) is an injectable medication that counteracts interleukin-23, a chemical messenger closely involved in the development of psoriasis. The standard dosing is two injections to start, followed a month later by two injections once a month, and then two injections once every three months.

Did you catch that “injectable” part? This is not a pill. If you missed that point while watching the commercial, it’s not your fault. The word “injection” appears once, written in faint letters at the very end of the commercial.

By the way, the FDA has only approved this drug for moderate to severe — not mild — plaque psoriasis. The studies earning approval enrolled people with psoriasis on at least 10% of their skin and two separate measures of severity.

What the ad gets right

  • The ad states that 75% of people with moderate to severe psoriasis experienced 90% clearance of their rash within four months after only two doses of Skyrizi. This reflects the findings of research studies (such as this one) that led to the drug’s approval.
  • The recommendations regarding screening for infections (including tuberculosis) and telling your doctor if you’ve gotten a recent vaccine are appropriate and should be standard practice. By lowering the ability to fight infection, this drug can make current infections worse. It may reduce the benefit of certain vaccines, or increase the risk of infection when a person gets a certain type of vaccine called a live-attenuated vaccine.

And the theme song? People with visible psoriasis often cover up their skin due to embarrassment or stigma. The rash isn’t a contagious infection or a reflection of poor health, but other people may react as if it is. So, an effective treatment could potentially allow some to forego covering up and show more skin: it means “everything” to someone suffering with psoriasis to cover “nothing.” Thus, a theme song is born.

What else do you need to know?

A few things about this ad may be confusing or incomplete, including:

  • Currently, each dose of Skyrizi is actually two injections. So, a more accurate way to summarize its effectiveness would be to say that improvement occurred within four months after four injections (rather than “just two doses”).
  • Like most newer injectable medications, this one is quite expensive: a year's supply could cost nearly $70,000. The drug maker offers a patient assistance program for people with low income or limited health insurance, but not everyone qualifies. Health insurance plans generally require justification from your doctor for medications like Skyrizi, and your insurer may decide not to cover it. Even if covered, this prior approval process can delay starting the medication, which may still be expensive due to copays and/or deductibles.
  • There is no mention of the many other options to treat psoriasis, some of which are far less costly. These include medications that do not have to be injected (such as oral methotrexate or apremilast), and UV light therapy (phototherapy). And there are other injectable medications. So, ask your doctor about the best options for you.

The bottom line

Some people appreciate the information provided by medication ads. Others favor a ban on such advertising, as is the case in most other countries. And recently, two advocacy groups asked the FDA not to allow drug ads to play music when the risks of drug side effects are presented, arguing that it distracts consumers from focusing on this important information.

Since these ads probably are not going away anytime soon, keep in mind that they may spin information in a positive light and leave out other important information altogether. So, be skeptical and ask questions. Get your medication information from your doctor or another unbiased, authoritative source, not a company selling a product.

Regardless of how you feel about medical advertising, it’s hard to hate the Skyrizi theme song. Feel free to sing along.