🚫 When Support Isn’t Supportive: A Caregiver’s Warning (Anonymous)

When my husband was diagnosed with prostate cancer, I expected the support of a community who understood. I hoped to find a place where I could share my fears, ask questions, and find the reassurance that I wasn’t alone in this difficult journey. I joined an online support group, thinking I’d be met with empathy and understanding. What I didn’t expect was to be met with judgment, condescension, and even blame. And to make matters worse, this came from someone who claimed to be a therapist.

At first, I thought it was just a misunderstanding. Maybe I was reading it wrong. But then the comments kept coming, each one more dismissive than the last. And it wasn’t just anyone—it was someone who was supposed to be offering help, someone licensed to give advice.

This experience taught me an important, painful truth: not all help is helpful.

Being licensed doesn’t always mean someone is kind. Experience doesn’t always equal integrity. And just because you're in a support group doesn’t mean the group is emotionally safe. Sometimes, those who are supposed to help end up adding more stress, guilt, and shame.

One of the most painful comments came from a post I shared about my husband’s smoking after treatment. I was devastated, feeling betrayed and heartbroken. I shared my frustration, not to shame him but to express the pain I felt. And yet, the response I received was harsh:

• "He had to lie because of your reaction."

• "You need therapy."

• "Sorry I wasted my time."

It felt like I was being told I was overreacting, that my emotions were invalid, and worse—suggested that advocating for my husband’s health was somehow wrong. It was emotionally jarring, to say the least.

And that's when I realized, this wasn’t just a moment of hurt feelings—it was a critical lesson for every caregiver. It was a reminder that caregivers not only need to protect their loved ones from physical harm but also need protection from emotional harm, gaslighting, and invalidation. And if that support—whether from a professional or a fellow caregiver—makes you feel smaller or silenced, it’s not truly support.

Here’s what I learned, and I want to share it with you:

You are allowed to feel what you feel.
You are allowed to speak up.
You are allowed to set boundaries.
And most importantly, you are allowed to walk away from any voice—professional or not—that makes you feel ashamed for caring too deeply.

A Caregiver’s Checklist for Navigating Bad Advice

As caregivers, we can’t afford to doubt ourselves when we’re already questioning so much. If someone is offering advice or “help,” ask yourself these questions:

• Does this person honor my pain—or dismiss it?

• Do I feel more grounded or more ashamed after talking with them?

• Am I being asked to swallow my truth for someone else’s comfort?

• Are they urging me to “accept” something I am not ready to accept?

• Do they speak to me with respect—or superiority?

If the answers to these questions leave you feeling more isolated or invalidated, trust your gut—this is not the kind of support you need.

Final Thoughts

This experience in the support group wasn’t just a one-off comment. It was a wake-up call that caregivers need protection, too—not just from cancer but from the emotional toll that others’ words can have on our mental and emotional health. Those who wield credentials or positions of authority should be held to a higher standard, one that includes kindness and empathy. Unfortunately, that’s not always the case.

So if this happens to you—if someone minimizes your experience, invalidates your emotions, or makes you feel like you're wrong for caring too much—please don’t carry those words as truth.

You are not too much.
You are not wrong.
You are not alone.

And remember, no one else has the right to dictate how you should feel or how you should show up for your loved one. The journey may be difficult, but you are strong enough to handle it, especially when you honor your own feelings and boundaries.

If you find yourself struggling with these feelings, know that you are not alone. Reach out to others who understand, and protect your emotional health as fiercely as you protect your loved one’s.

The List I Almost Forgot

We were halfway to the cancer center when my stomach dropped — the notebook was still on the kitchen table. Not just any notebook. The one with our carefully written “Top 5 Questions for the Doctor.” The one we had spent three nights putting together, me scribbling while he paced the living room, adding questions as we thought of them.

I could feel the anxiety bubbling up — that sick mix of frustration and fear. Without it, I worried we’d forget something important, and the visit would pass in a blur. I closed my eyes, took a slow breath, and started typing the questions I could remember into my phone. One by one, they came back to me. Not in the same order, not word for word, but enough to keep us from leaving without answers.

When we finally sat down with the doctor, I was able to ask every single one. That day reminded me — preparation doesn’t have to be perfect to be powerful. Sometimes the act of thinking through the questions ahead of time is just as valuable as holding them in your hands.

📄 Related Tool: Top 5 Questions for the Doctor - Fresh Tools & Ideas

🌿 The Day I Found My Voice

On the drive to the doctor’s office, I asked my husband how he was feeling.

The words spilled out like a tide that had been held back too long — every ache, every side effect, how exhausted he felt, the way depression had been creeping in. Then came the words that made my chest ache: “Sometimes I just feel like giving up.”

I held all of it in my mind, determined to make sure the doctor knew.

But when we sat down in the exam room and the doctor asked, “How are you doing?” my husband simply said,
"I’m okay."

I froze for just a second, caught between surprise and the sudden knowledge that this moment mattered.

So I leaned forward and said,
"No, doctor, he’s not doing okay. This is what’s really going on."

The doctor turned to me, then back to my husband, and gently said,
"Tell me more."

And in that small invitation, something shifted. My husband began to share — slowly at first, then more openly — what he had told me in the car. It was raw and uncomfortable, but it was honest.

That day taught me that sometimes my role as a caregiver is to open the door, just enough, so my loved one can walk through with his truth. It’s not about speaking for him; it’s about making sure he’s truly heard.

💬 Have you ever had to be the one who says, “No, here’s what’s really going on”? What happened next?

The Post-It on the Nightstand

It was 2 a.m., and my mind was running endless laps. Test results. Next week’s appointment. The “what if” that had been sitting in my chest all day. I reached for my water glass and saw the little yellow post-it I had stuck there earlier in the evening: “You’re doing enough.”

That post-it came straight from the Caregiver Calm Kit — a resource I had printed months ago and tucked away, telling myself I’d “use it later.” Funny thing is, later never feels like it’s going to come, until it does. That night, those three little words were the anchor I needed to keep from drifting into panic.

It didn’t solve anything big. The medical challenges were still there in the morning. But it shifted the weight in my chest just enough for me to breathe, to sleep, to wake up and face the day without feeling like I’d been running all night. Sometimes the smallest things — a phrase, a post-it, a reminder you’re not failing — are the strongest threads holding you together.

📄 Related Tool: [Caregiver Calm Kit] – Emotional Support & Self-Care section

The Day He Laughed Again

We had errands to run that day, and I dreaded getting into the car. Lately, those drives had become minefields — one-word answers, heavy sighs, or no response at all. Sometimes I felt invisible to him. Other times, I was the target of his frustration and anger. I knew it came from fear and exhaustion, but that didn’t make it hurt any less.

That morning was no different. I sat behind the wheel, gripping it so tightly my hands ached, waiting for the ball to drop — for him to say something sharp or mean that would leave a bruise I couldn’t see but would carry the rest of the day. The silence in the car felt heavy, pressing down between us.

Then, without warning, he roared with laughter — a deep, unrestrained laugh I hadn’t heard in months. I jumped, startled, and glanced over to see him grinning, pointing out the passenger window.

And there it was: sitting on someone’s front porch, a Great Dane puppy, maybe eight weeks old, wearing the most ridiculous homemade “helmet” — a gallon plastic milk jug with the bottom cut out, snug over his head, and a chin strap made from an old leather belt. The poor pup had just had his ears cropped, and this contraption was meant to keep him from scratching at them. He looked like a tiny, wobbly gladiator, proud and clueless all at once.

For a moment, the heaviness between us broke open. We laughed together — really laughed — and it felt like fresh air rushing into a sealed room. That moment reminded me that even in the hardest seasons, joy can still sneak in and surprise you. And when it does, it’s worth holding onto with both hands.