Before you try to help someone with PH, know the dos and don’ts

The world is full of opinions, personalities, and attitudes. On my first day of nursing school, our dean told us to treat others as we’d treat our family or loved ones. How would we want nurses to treat them? This stuck with me, as I’ve tried to deal with others respectfully, no matter our differences.

If you know someone with a rare disease, you may want to help, but how? Think about how you’d like to be treated if the script were flipped.

Friends and family are essential to a patient’s support team. But they can have trouble fully understanding the day-to-day experience of living with a rare disease — in my case, pulmonary hypertension (PH). Relatives and friends mean well, but they’re outsiders, and they can unintentionally add to our burden with what they say and do.

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What can hurt

You can see how vital a support system can be for those like me, with a rare disease. Patients with a strong support network usually do better long term. But you can support those with a rare disease by not using toxic positivity, which refers to a distorted belief that pervasive happiness is the key to wellness and that positivity is the only acceptable emotion.

Some examples of toxic positivity include:

• “It could be worse.”
• “Just breathe!”
• “Everything happens for a reason.”
• “You’re young and have time.”
• “You should be a pro now that you’ve had PH for years.”

It’s not that I’m not optimistic. But there’s a fine line between finding a silver lining and being a “Positive Polly” 24/7. That’s unrealistic because life with PH is not all positive and comes with a roller coaster of varying emotions.

I’m grateful for loved ones and friends who understand some of my PH struggles. They know me and how I often tend to sugarcoat things, because most days, I look fine on the outside. But those closest to me, my strongest supporters, know when something’s off just by looking at me or hearing my voice. They often call me out on it, too. That’s OK because their knowing observations validate that I’m sick with this rare disease.

What helps

Fortunately, there are ways friends and family can support those with PH Here are some ideas that have helped me, and some I hear benefit others. Please see the tips below for helping your friends and loved ones with a rare disease.

Some people forget that we wish to be treated like everyone else; we want to fit in. Listen without judgment and ask how you can help. Validate our feelings by waiting and allowing us to express our emotions. I’m often an emotional hot-mess express. It happens to the best of us. But getting it out to someone who’s actively listening helps.

Be empathetic when we must cancel plans, even at a moment’s notice. It’s frustrating when we’ve planned something with friends and loved ones, and something pops up — like increased pain, side effects from medications, or an exacerbation of PH symptoms. We don’t like canceled plans and hate to tell you about them. This often makes it challenging to plan anything. It sucks, we know.

Offer practical assistance, such as grocery shopping, lawn mowing, babysitting, meal delivery, or transportation to medical appointments. These errands may sound minimal, but to someone with a rare disease, they’re a huge help. Also, if you have a cold, cough, sniffles, or anything of the sort, remember to be respectful, as many with rare diseases have compromised immunity.

Encourage support from others within the PH community (or that of another rare disease). This support can come through online or in-person groups. Talking with others who’ve been there and are dealing with similar experiences helps us know we aren’t alone. I co-moderate the PH News Forums, and we’d love to have you join us if you haven’t already.

What other things can you do to help someone with PH or another rare disease? I’d love to hear about them in the comments below.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.