THE FIBROMATES JOURNAL

by Shelley Taylor, Guest Blogger

I’m sitting on the balcony, enjoying the cool air and the sounds of the neighborhood.  The loudest thing I hear is the drummmm of the ancient AC unit a neighbour is using.  

Usually the drone of it can be ignored, but there are times it seems to drown out even the grasshoppers.  Like tonight–its rhythm is steady and somewhat pleasant, if you can disregard the B flat the squeak makes. Barely can the grasshoppers even be heard!

Life is full. And bountiful. And even joyful at times. But you have to be in a good, somewhat healthy space to see or recognize those blessings.  Most often, the difficulties of life and current circumstances can blind you to being able to see ANY kind of light, much less joy.

But…it CAN happen.  It HAS, to me, and is still happening daily.  It’s taken really hard work; years of it, and much hardship. And much, much prayer.  Many times, I truly didn’t know what my next step would be.  But I’ve made those steps, many little ones, to get me here, now.

And, I’m getting ‘there’ – living my best authentic life, in spite of my limits and boundaries.  I’ve got a mighty toolbox built up of tips and tricks of the chronic illness trade, and a big personal support system to remind me to use them.

I’ve built myself a mighty space where I feel supported and able to live my best, authentic self.  I really don’t need for anything. Other than my fresh veg and the occasional bag of Costco Crack (Chicago Mix!). 

How blessed is that?  Who else can claim that? What value or price can you put onto that? Amex would say Priceless. I do too!

And guess what?  Now I can only hear the grasshoppers…no more AC machine.

I chose joy.

It can be done.

Prayers for those who can’t see the light…yet. Its there.

Shelley is a 70 yr old Napanee Ontario resident who is enjoying becoming a Crone and Wise Owl to her friends. She loves art, music, crocheting and is working hard doing the healing work necessary to live her best life. Diagnosed with Fibro after breast cancer surgery and treatment (during Covid), Shelley has found friendship, support and valuable survival tips, while being a member of FSN. Dabbling in personal journals and on Facebook, Shelley is trying to create a routine for writing, and hopes it soon becomes a comfortable habit. Shes grateful for the encouragement from Irene and other members to continue writing.

The photos are from my recent holiday at Dawdle Haven North.  Hooking and happy on the veranda, and enjoying a glass of champers with the memorial candle burning in memory of a lost loved one. The background is the glorious terraced grounds leading to the lake.

by Irene Roth, Blog Editor/Writer

One of the most frustrating experiences for a fibromate is walking into a medical appointment hopeful—and walking out feeling dismissed. When a doctor doesn’t understand or acknowledge the depth of pain and fatigue you live with every day, it can feel invalidating, discouraging, and even traumatizing. Unfortunately, this is a common reality for many living with fibromyalgia. But there are constructive ways to respond, advocate for yourself, and protect your wellbeing.

Here’s what you can do if a doctor just doesn’t get it.

1. Don’t Internalize the Dismissal

First and foremost, remind yourself: your pain and fatigue are real. Just because a doctor doesn’t understand your condition doesn’t mean it’s not valid. Fibromyalgia is an invisible illness, and its fluctuating symptoms can be difficult for others to grasp—especially those who still cling to outdated thinking or lack training in chronic pain conditions.

Instead of taking it personally, see it for what it is: a gap in their knowledge or compassion—not a reflection of your worth or experience.

2. Use Clear, Descriptive Language

If you feel misunderstood, try reframing how you describe your symptoms. Replace vague terms like “I’m tired” or “I hurt” with more specific language:

• “I feel like I’m walking through wet cement every morning.”
• “Even light pressure feels like bruising pain.”
• “By the afternoon, I’m too exhausted to hold a conversation.”
• “Pain wakes me from sleep and stays with me all day.”

Concrete imagery and examples can help doctors better understand your lived reality.

3. Bring Written Evidence

Sometimes, doctors respond better when they can “see” your symptoms over time. Bring a symptom tracker, pain diary, or fatigue log to your appointment. Note when symptoms spike, what your activity level was, and how they impact daily life.

This shifts the conversation from abstract complaints to documented patterns. It also reinforces that you are actively managing and monitoring your health—not exaggerating or being dramatic.

4. Ask for Referrals

If your doctor dismisses or downplays your concerns, ask for a referral to a specialist. Rheumatologists, pain management experts, and even integrative medicine practitioners often have more experience working with fibromyalgia. You can say something like:

“I’d like to see a specialist who works with patients who have chronic pain and fatigue. Can you recommend someone?”

If your doctor refuses, consider that a sign it may be time to move on.

5. Get a Second Opinion

You deserve to be believed. If your current doctor is unwilling to acknowledge or explore your pain and fatigue, seek out another provider. Look for practitioners who list chronic pain, fibromyalgia, or trauma-informed care in their bios. Patient support groups can also be a great source of recommendations.

It may take time to find the right fit, but it’s worth it. The right doctor will listen, validate your experience, and collaborate with you on a treatment plan that meets your needs.

6. Bring an Advocate

If appointments often leave you feeling tongue-tied or overwhelmed, bring someone with you. A trusted friend or family member can back you up, ask questions, and ensure your concerns are heard. Sometimes, just having someone there shifts the dynamic in the room—and helps you feel more empowered.

7. Know When to Walk Away

If a provider continually gaslights, belittles, or ignores you, it’s okay to end the relationship. You’re not “difficult” for expecting to be heard—you’re exercising your right to safe, respectful healthcare.

Being disbelieved by a doctor is painful. But you are not alone, and you are not without options. Your voice matters. Your pain matters. And your persistence in seeking compassionate, informed care is both courageous and necessary.

You are not “making it up.” You are managing something real, complex, and exhausting. Keep advocating, keep asking questions, and keep seeking the care you deserve. Because your health, your story, and your life are worth it.

by Irene Roth, Blog Editor/Writer

Living with fibromyalgia can be an isolating and frustrating experience—especially when you’re trying to communicate your symptoms and concerns in a medical setting. Because fibromyalgia is often misunderstood, invisible, and complex, fibromates frequently report feeling dismissed, misdiagnosed, or unheard by healthcare professionals. That’s why self-advocacy is not just important—it’s essential. When you speak up with confidence, clarity, and preparation, you take back some control over your care.

Here are practical ways fibromates can advocate for themselves in medical settings.

1. Come Prepared with Documentation

Before your appointment, take the time to write down your symptoms, concerns, and questions. Keep a health journal to track daily pain levels, fatigue, medication side effects, and triggers. Bring this with you to your appointment—it’s evidence of your lived experience. Having concise notes can also help when brain fog or fatigue make it hard to recall key points during the visit.

If possible, bring a printed list of all medications, supplements, and treatments you’re using. This helps your provider see the full picture and avoid harmful interactions.

2. Learn the Language of Your Illness

Understanding basic medical terminology related to fibromyalgia can help you speak the language your doctors use. Being able to describe your pain in specific terms—burning, throbbing, aching, sharp—makes it easier for healthcare providers to understand and assess your symptoms. Learn common comorbidities (such as IBS, migraines, or depression) and discuss how these might intersect with your fibromyalgia.

3. Speak with Confidence, Not Apology

Many fibromates have been conditioned to downplay their symptoms or feel like they’re “bothering” their doctor. But you have the right to speak up. Say what you need without apologizing for it. Phrases like “I know my body, and something isn’t right,” or “I’ve been tracking this for a while and need your help understanding it” can open the door to more collaborative care.

Remember, you are not a burden. You are a person deserving of care and respect.

4. Ask Clarifying Questions

If you don’t understand something your doctor says, ask. Request explanations in plain language, and don’t be afraid to say, “Can you explain that in another way?” or “What are the risks and benefits of that treatment for someone with fibromyalgia?” This not only empowers you but also signals to your doctor that you are actively engaged in your health.

5. Know Your Rights and Options

In many healthcare systems, you have the right to a second opinion or to switch providers if you’re not receiving adequate care. If your concerns are being brushed off or you feel disrespected, you don’t have to stay silent. Consider asking to be referred to a rheumatologist, pain specialist, or another provider with experience treating fibromyalgia.

You can also bring a support person to your appointment, especially if you need help remembering details or feel overwhelmed. They can advocate with or for you.

6. Join a Support Network

Connecting with other fibromates, whether in person or online, can provide validation, resources, and encouragement. These communities often share experiences with local providers, recommend patient-friendly doctors, and offer templates for symptom tracking or self-advocacy scripts.

7. Celebrate Small Wins

Self-advocacy can be draining, especially when appointments don’t go as hoped. But every time you speak up, ask a question, or assert your needs, you’re building strength and resilience. Recognize your bravery—even if the outcome isn’t perfect.

Navigating the medical system with fibromyalgia takes courage, persistence, and preparation. But you are not powerless. By advocating for yourself, you help shape a future where fibromates are believed, respected, and given the care they deserve. You are the expert of your body—and your voice matters.

Let your voice be steady. Let your presence be known. And let your journey toward better health be guided by your determination to be heard.