How I struggle to manage chronic pain during the holidays
The mental and emotional burden can be difficult to explain to loved ones
Are you managing chronic pain alongside pulmonary hypertension (PH)? Did it disrupt your holiday plans?
If you answered yes, you’re not alone. Many folks in the PH and broader rare disease communities share similar frustrations with having to adjust plans because of unrelenting pain. Dealing with chronic pain is an invisible battle that affects not only the body but also the mind. Pain shows up uninvited, especially during moments I look forward to, such as when I’m spending time with loved ones. And pain doesn’t like to share control.
Over the holidays, I had many plans — things I was excited to do and tasks I wanted to tackle — but most of them didn’t happen. If I had to sum up my Christmas and New Year’s break in one word, it would be “sleep.” Wrapping myself in my heated blanket, taking medication, and searching for relief became my routine.
Navigating this season while managing chronic pain and the side effects of my many medications is grueling. The heaviness and throbbing in my legs and back can be attributed to osteoarthritis, and when my chronic kidney disease progresses, my back pain intensifies. I’ve been told I have a high pain tolerance, which sometimes allows me to avoid taking medication for it. But when the pain becomes unbearable, I have to give in.
Lately, I’ve found myself needing more medication and rest than usual, which leaves me feeling defeated. I understand this reality, but I struggle to explain it to those closest to me.
Navigating life with daily pain
After dealing with chronic pain for so long, I’ve learned to accept it as part of my daily life, although that hasn’t been easy. Talking about it is even more difficult. There’s a stigma associated with managing chronic pain, which often leaves me pushing through it in silence. And that’s exhausting.
If I have plans or other things to do, I’ll often delay taking my medication until the pain is overwhelming. I don’t want to seem weak or like a burden to others, so I push through. But inevitably, the pain catches up, leaving me too drained to enjoy time with loved ones.
Friends and family often overlook the emotional toll of this constant battle. The physical pain is accompanied by a mental and emotional burden that I carry every day. This ongoing battle has caused me to feel isolated and disconnected from everyday life. It’s difficult for people who don’t experience chronic pain to understand its impact. Still, I keep going, using multifaceted approaches to find relief. Even on my most challenging days, hope and faith remain.
Yet I wonder: Do my loved ones notice the changes I experience with PH and my increased pain? Do they see my physical abilities fading while my PH progresses? How could they, when I often appear fine on the outside?
But that’s not the whole story. Some days, the weight of it all feels overwhelming, and I want to give in. But then I remember what I’ve already overcome since my PH diagnosis almost 20 years ago, and that fuels me to keep going. I hope others will acknowledge and admire this resilience of mine.
I’ve distanced myself from many people. The one person who sees it all, especially on unbearable days, is my husband and caregiver, Manny. He sees my pain even when I wish he didn’t have to. I know he struggles with it, too, and I try to support him on this journey as well. What I need most is understanding and support, not just from Manny but from everyone around me.
Pain can rearrange priorities, and I’m still learning to navigate this reality. Too bad pain and PH don’t take a break during the holiday season, too.
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.
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