“People always tell you to ‘stay positive.’ But no one tells you what to do when that positivity runs out.”
If you or someone you care for lives with Parkinson’s disease (PD), you’ve probably heard this advice countless times. “Stay positive.” It’s meant as encouragement, but in reality, it can feel overwhelming — even impossible. What happens when positivity isn’t enough? When a cheerful outlook no longer helps you cope with the daily realities of Parkinson’s?
I’m David from Life With Parkinson’s. In this post, I want to share what I’ve learned about the role of positivity in living with PD — and why it’s okay for positivity to sometimes fail. I’ll also explore strategies for coping when positivity runs dry, and why acknowledging our limits is a critical part of managing life with Parkinson’s.
The Early Days: Chasing Hope
When I was first diagnosed, hope felt like a lifeline. Every conversation, every news update about potential treatments or breakthroughs, seemed to promise a brighter future. I remember discussing this excitement with a couple of YouTube friends who had been living with Parkinson’s for over a decade.
Their response was almost identical:
“Dave, we’ve been hearing that since day one. That next corner never comes.”
This was my first real encounter with what I now call the “false hope bus service.” It’s the cycle of believing a cure is always around the corner, only to face the reality that progress is slow, uneven, or inaccessible. Hope is essential — it motivates us to keep going, to try new therapies, and to engage with our care — but relying on it as the only tool can leave us unprepared for setbacks.
Hope, in its purest form, is powerful. But it can also be fragile. For many people living with Parkinson’s, hope alone is not enough to manage the emotional, mental, and physical toll of the disease.
Staying Positive: Focus or Performance?
A few months ago, I went hunting with my son-in-law, Matt. Physically, it was a challenge I hadn’t faced in years. I wasn’t sure how my body would respond. I pushed through, reassuring both myself and others with phrases like “I’ll be okay” or “No problem.”
But that experience forced me to ask myself an important question: Was I genuinely focused on positivity, or was I performing it?
Like many of us with chronic conditions, I realized I had been masking my struggles with optimism. There’s a difference between using positivity as a tool and wearing it as a mask. When it becomes performance, it stops being supportive. Instead, it adds pressure — pressure to appear okay even when you’re not.
When Positivity Fails
There are moments when positivity simply cannot help. I experienced this firsthand with my medication. Apomorphine, which I relied on as a rescue medication, was discontinued. First the injections, then the sublingual strips — and for Canadians, there was no alternative available.
The frustration I felt was immense. It wasn’t just personal — it was a reminder of how fragile our support systems can be. Positivity didn’t fix the problem. Pretending everything was fine felt hollow.
This is a reality many people living with Parkinson’s face: medications change, supplies run out, therapies become unavailable, and our bodies become less predictable. In these moments, positivity alone cannot resolve the underlying challenges — it can only guide how we respond.
Positivity as a Tool, Not a Mask
Through my journey, I’ve learned that positivity is most effective when it is intentional and practical. It should not be constant or performative.
Using positivity as a tool means:
- Choosing how to respond to challenges rather than denying them.
- Framing difficult situations in a way that allows you to take action.
- Pairing honesty with hope, acknowledging struggles without letting them define you.
Practical positivity might look like:
“This symptom is frustrating, but it’s teaching me more about my body than I ever knew before.”
It’s about mental clarity and balance, not forced cheerfulness. Positivity can be used to calm yourself before medication kicks in, reframe fear, or approach caregiving and daily tasks from a place of perspective rather than despair.
The Role of Mental Health in Parkinson’s
Parkinson’s doesn’t just affect the body — it affects the mind. Anxiety, depression, and emotional fatigue are common among people with PD. Expecting constant positivity can make these mental health challenges worse.
Recognizing when you need support is vital. Therapies such as cognitive behavioral therapy (CBT), counseling, mindfulness practices, or support groups can provide coping mechanisms that are as important as medication. Positivity is helpful, but it is not a substitute for professional care or emotional support.
For Caregivers: Understanding Positivity and Realism
If you care for someone with Parkinson’s, it’s equally important to recognize the balance between encouragement and realism. Encouraging positivity is helpful, but pushing someone to “stay positive” constantly can feel invalidating.
Instead:
- Listen and acknowledge struggles without judgment.
- Celebrate small wins without minimizing challenges.
- Encourage practical optimism: “This is hard, but what’s one small thing we can do today to make it better?”
Caregivers, like those living with PD, need tools for mental resilience. Honesty, perspective, and support networks are as critical as positivity.
Honesty is Strength
One of the most important lessons Parkinson’s has taught me is this: it’s okay not to be okay.
Admitting you’re struggling doesn’t make you weak — it makes you human. Positivity has a role, but so does acknowledging pain, frustration, and fear. Real resilience comes from balancing hope with honesty — accepting your limitations while finding small ways to move forward.
If you’ve ever felt like you’re failing at staying positive, you’re not. You’re being real. And that honesty is where true strength begins.
Practical Takeaways for Living with Parkinson’s
- Use positivity deliberately. Treat it as a tool, not a mask.
- Acknowledge your emotions. It’s normal to feel fear, anger, or frustration.
- Seek professional support. Therapists, support groups, and counseling are critical for mental well-being.
- Focus on small wins. Celebrate what you can do, not what you can’t.
- Encourage practical positivity in caregivers. Support networks benefit both the person with PD and their caregivers.
Closing Thoughts
Living with Parkinson’s is a journey of ups and downs. Positivity can help, but it isn’t a cure-all. It’s okay to admit when it’s not enough. By pairing honesty with hope, and combining positivity with practical coping strategies, people with Parkinson’s — and their caregivers — can navigate this journey with resilience, clarity, and humanity.
Thank you for being part of this community. Every read, comment, and share strengthens this network of people living with Parkinson’s. Be kind to yourself — and remember, it’s okay not to be okay.
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Medical Disclaimer
I’m not a medical professional. The experiences shared here are personal and should not replace professional medical advice. Always consult your doctor or neurologist regarding any treatment or medication changes related to Parkinson’s disease.
