You miss every green light on your way to work. An unexpected doctor’s bill finds its way into your inbox. You want to take a nice relaxing bath to wash off the day, but no water comes out of the faucet. We all have those days when the universe feels like it is against us. For those managing a chronic condition, such as pulmonary hypertension, those days can feel far more common.

Living with pulmonary hypertension can sometimes feel like you don’t have control over your body, making certain days feel harder to manage symptoms.

Rachel Roberts, diagnosed with pulmonary arterial hypertension in 2010, and Janessa Curnow, diagnosed with PH in 2013, share tips on how to cope with PH during those hard days.

Dealing with hard days

Roberts of Fresno, California, says her hard days are filled with physical, mental and emotional breakdowns and to cope she takes a “down day.”

“I’m all about self-care. I wear my favorite pajamas, take a hot bath or shower, make my comfort foods and do a face or eye mask,” says the Central Valley PHA Support Group leader. “A little extra love goes a long way. We only get one body, and we need to care for it.”

For Janessa Curnow of western Michigan, multiple factors affect her PH symptoms each day, including weather and sleep.

“My sleep the night before is a good indicator of how much pain I will be in that day,” Curnow says. “Also, the weather plays a huge role in my symptoms. Is it a cold winter day or a hot muggy day where I’ll have extra trouble breathing?”

I’m all about self-care. I wear my favorite pajamas, take a hot bath or shower, make my comfort foods and do a face or eye mask. A little extra love goes a long way. We only get one body, and we need to care for it.

Curnow notes that her mental health is heavily affected by her physical health, so if she is in more pain or is extra fatigued, her mental health suffers.

“Sometimes a mentally hard day is a day when I know I’m missing out on plans because of my symptoms, or I try to do something but can’t. Even 13 years into managing this condition, those things are still hard to cope with.”

For both Roberts and Curnow, exhaustion is a telltale sign that a hard day is approaching.

“I can feel a shift in my entire body,” Roberts says. “The fatigue sets in and my body feels heavy. It is peak exhaustion.”

Curnow also notes she may experience swelling in her abdomen, feet and legs, which is a sign to slow down and increase hydration.

Coping with the uncontrollable

When a hard day approaches, Curnow gives herself time and space to feel sadness, anger, frustration or whatever emotions come up. She asks herself, “What is the true issue behind these feelings?”

“It’s important to know what’s at the core of my emotions. I might think it’s as simple as, ‘I’m mad because I couldn’t do this activity because of my PH.’ But diving deeper, I usually realize I’m feeling scared because I don’t have control over my body,” Curnow says. “In those moments, I actively try to be compassionate toward myself and give myself grace.”

Roberts accepts the mantra that everything happens for a reason. “I remember that I have made it through 100% of my bad days, and this too shall pass,” she says.

Activities to ground you

On difficult days, Curnow participates in low-effort comfort activities such as going to a movie theater, painting her nails, playing video games or chatting with friends.

She also loves to laugh in those hard moments. “I’ll watch a comedy, listen to a funny podcast or talk to a friend who can always make me laugh. It can be hard, but, if possible, it feels extra good when I get a good chuckle out.”

I’ll watch a comedy, listen to a funny podcast or talk to a friend who can always make me laugh. It can be hard, but, if possible, it feels extra good when I get a good chuckle out.

Roberts focuses on meditation and sound therapy to help her remain grounded and centered.

“I do this daily on good and bad days to keep my ‘bubble’ from being popped,” Roberts says. “We are responsible for how we react to circumstances in our lives, and I will always choose happiness over sadness.”

Mindset shifts

Curnow’s biggest mindset shift is positive self-talk. When she catches herself saying something negative, she counters it with two positives that are sincere.

“Let’s be honest, when you’re feeling down, a direct counter won’t work. For example, if your subconscious says, ‘you’re ugly,’ countering with ‘I’m beautiful’ feels disingenuous. So, you need positives that sound sincere,” Curnow says. “Now when I think, ‘It’s not fair that I have PH,’ I acknowledge it’s true, but I then acknowledge some positives in the world around me, like if it’s a beautiful day or if someone holds the door for me. Does it take away that it’s not fair that I have PH? No. But it helps get me through those feelings.”

Curnow also had to shift her mindset around how the world views disability.

“People see someone using a mobility scooter or wheelchair and pity them, but the truth is, using those devices gives people like me more ability and independence,” Curnow says. “Non-disabled people often think needing those devices is a bad thing, but the only bad thing is if a disabled person needs a device but can’t access one. That is sad. That’s when someone should feel bad.”

Roberts reminds herself to listen to her body.

“I know my limits and listening to them is key. I know if I push those limits, I will pay over the next few days. Do I push my limits? Absolutely! But, I am mindful of the possibility of having to recover after,” Roberts says.

Living in a capitalist society that tells you your value is tied to what you produce can make you feel unworthy if you’re not working, Curnow adds.

To combat this, she reminds herself of two things: Your worth comes from being a person, not from what you can produce, and rest is productive for everyone.

Tips for those new to PH

To those newly diagnosed with PH, Roberts and Curnow both say you don’t have to struggle alone.

Curnow recommends finding community through PH, chronic illness and lung support groups. PHA offers multiple in-person and virtual support groups, and Facebook groups where people in the PH community offer advice and strategies to support one another.

“The support from my family and friends is amazing, but there’s something different about speaking to other people who truly understand what you’re going through and help you feel less isolated, since a lot of us experience similar daily struggles,” Curnow says.

Both Roberts and Curnow recommend seeing a therapist. Having someone who listens without judgement can help you reframe your thoughts and feel heard.

“I see my therapist once a week and never miss my appointments,” Roberts says. “Clearing my mind and learning how to forgive myself and others for emotional trauma caused by PAH has reduced my anxiety and depression tremendously. We don’t need to struggle alone.”

Curnow reiterates that seeing a mental health specialist and/or taking medication for mental health doesn’t mean something is wrong with you. It means you’re human.

“Every human needs help. I have been in therapy even before I was diagnosed with PH and it’s so important,” Curnow says. “Be open, honest and vulnerable. It’s a space to talk about PH and everything else that you need to focus on to improve your mental well-being.”

Harsh realities

Because PH is invisible, most people do not understand the limitations. But Curnow and Roberts explain that just because someone doesn’t have visible signs of PH doesn’t mean they aren’t struggling.

“Most people with chronic conditions live at a level of pain (physical and/or emotional) that the average non-disabled person could not handle. And we often mask that pain for various reasons, one of which is to keep the non-disabled people around us comfortable,” Curnow says. “It is extremely isolating to not know another person who knows exactly what you’re going through. It’s even more isolating to feel like we can’t live honestly because we either make people uncomfortable or they don’t believe us.”

Roberts acknowledges PH has taken a lot from her over the years but tries to always remain grateful.

“No amount of rest and emotional stability will ever change the fact that I will have this disease forever, but I will not let it take my happiness and optimistic attitude. Good vibes equate to good energy. I will not let negative emotions ruin my energy. I protect my peace at all costs.”