When You’re Not Believed: Advocacy Tactics That Help When Dealing With Chronic Pain

Most stats say that about 20% of Canadians suffer from chronic pain, so, that’s 1 in 5 people. So to say that chronic pain is a silent epidemic that affects millions worldwide, is an understatement. It's a relentless companion, dictating every aspect of life, yet often remaining unseen and misunderstood. For those living with chronic pain, the battle isn't just against the pain itself, but often against a medical system that struggles to acknowledge its severity and validity. In a culture where if you ask for something to treat your chronic pain, you are branded a drug seeker and addict, when all we want is relief. If you've ever been dismissed, doubted, or made to feel like your pain is "all in your head," and left to treat it with over the counter meds, you know the profound isolation and frustration this brings.

The Invisible Disability: Why Chronic Pain Goes Unseen

Chronic pain is, by definition, an invisible disability. This means there are no outward signs to indicate the profound suffering a person is experiencing. Unlike a broken arm in a cast or a visible wound, chronic pain leaves no physical mark that can be easily observed by others, including medical professionals. This is why so many are left without answers and without a proper treatment plan. The opiate crisis has also created a crisis for many Pain Warriors, many of whom have been forced to wean to a lower dose or completely off the very meds that give them some sort of quality of life. How cruel to deny us something that could drastically improve our quality of life, all because people taking them illegally are overdosing and the media portrays chronic pain sufferers as faking it to get drugs. 

This invisibility stems from several factors:

• Subjectivity: Pain is a deeply personal and subjective experience. There's no objective test – no blood marker, no imaging scan – that can definitively measure its intensity or even confirm its presence in many cases. I also think all drs should be required to look at the McGill Pain Index, especially for diseases like Complex Regional Pain Syndrome (CRPS), which rate a staggering 46 out of 50. That’s more pain than cancer pain, kidney stones, unmedicated childbirth and amputation. Imagine that for a moment if you will. That’s a lot of pain to try and visualize, but when you put it into perspective like the McGill Pain Index does, it does paint a better picture of what the pain level is like. 
• Neurological Complexity: Chronic pain often involves complex changes in the nervous system, where pain signals persist long after any initial injury has healed, or without any identifiable physical cause. These changes are not visible to the naked eye or on standard medical tests. This is why CRPS is often not diagnosed in a timely fashion, there are no tests for it, only process of elimination. That’s if you get a doctor that even knows what it is. That doesn’t mean that we shouldn’t be believed. I am so lucky that my doctor not only knew what it was, but knew all the right specialists to send me to, and he conferred with them until I could get in to see each one. 
• Societal Stigma: There's a persistent societal narrative that downplays invisible illnesses. If someone "looks fine," it's often assumed they are fine, leading to skepticism and judgment. I have run into this numerous times over the years. What people don’t realize is that my brain has been trained not to respond to most of the pain I experience. Walking shoots pains up my legs, if something bumps my legs it shoots more pain, they ache and throb, and through all that, I rarely respond visually to the spikes in pain. It has to get up to a 9 before I start to show I’m visibly in that much pain. Otherwise, I mostly act “normal” and because of that, most people don’t know how much pain I’m in. 
• "But you look so good!" This common, well-intentioned but hurtful comment perfectly encapsulates the problem. While you might put on a brave face, dress well, or push through daily activities, inside, your body could be screaming. This facade further contributes to the invisibility. This is a problem that most chronic pain sufferers encounter at some point. Just because we are in pain, doesn’t mean we stop wanting to live our life. Just because we dress well, or do our makeup, and try to keep up with the demands of life, or smiling in a picture,  while hiding our pain, doesn’t mean we are doing well. We mask, we cover it up, and we pretend things are ok. 

The impact of this invisibility on someone with chronic pain is immense. It can lead to:

• Delayed Diagnosis and Treatment: Without clear, visible signs, doctors may hesitate to pursue aggressive diagnostic testing or treatment plans. When I fell, my doctor was away for the month, so I was at the mercy of walk-in clinics, and I went multiple times, trying to get help. The doctors wouldn’t even look at my ankle, which was dark purple and mishapen, they just kept telling me that the pain I was feeling was normal, and that it was spreading, was all in my head. I was so glad when my doctor was back. He knew what it was right away, and I began treatment. 
• Medical Gaslighting: Being told your pain isn't real, is exaggerated, or is psychosomatic can be incredibly damaging, eroding trust in medical professionals and self-belief. I must have gone to the walk-in clinic at least 4 times, begging for help. I wasn’t even asking for pain meds, and I would tell them that, just that I needed help because something was not right. To be told it’s all in your head is incredibly distressing, because it’s not. My pain was real and no one was willing to help me. 
• Emotional Distress: The constant struggle for validation can lead to depression, anxiety, anger, and feelings of hopelessness. When you are not being listened to, and basically told to suck it up, it can’t be that bad, can lead to extreme mental distress, on top of the mental distress of being in pain. I’ve had many comments slung at me over the years from specialists and medical professionals, that dismissed my pain as not being real or not being as bad as I say it is, and it has impacted my mental health. When you are not being listened to, or believed, you give up hope, from the very people that are supposed to be supporting you, it can cause severe depression and anxiety, as well as anger. You feel isolated and alone in your pain and like there is no one that understands and angry no one is helping. That hits you deeply and can be soul crushing. 
• Social Isolation: Friends and family may struggle to understand, leading to withdrawal and loneliness. Being an invisible illness, if you don’t have experience with it yourself or with a loved one, chronic pain is hard to understand. How can we be in so much pain, yet still go about our lives? We can because we have to, we have little choice. We can’t do the same things we used to, and we begin to change, which some people have a hard time understanding. Having to cancel, or change plans because of chronic pain, leaves us feeling bad about ourselves and like we are letting the people in our life down. 

Advocating for Yourself: Strategies for Being Believed

Navigating a medical system that often prioritizes objective findings over subjective experience requires a proactive and strategic approach. Here are some advocacy tactics to help you be heard and taken seriously:

1. Become Your Own Expert

Knowledge is power. Understanding your condition, potential treatments, and even the limitations of medical testing can empower you. 

• Research Thoroughly: Learn about your specific pain condition, its mechanisms, and common treatments. Be wary of unreliable sources, but arm yourself with reputable information. This is really important, because most family doctors do not know a lot about chronic pain unless they’ve taken it upon themselves to learn more. Like I said above, I was lucky my doctor even knew what CRPS was. He’s amazing and has always treated me with dignity, believed me and gone out of his way to help me. My doctor has worked with Olympic athletes and used to be the Vancouver Canucks doctor. He is now with the soccer club the Vancouver Whitecaps, and knows a lot about injuries and treating them. I still did a lot of research, but didn’t have to convince him of what was happening to me. He knew and believed me and I’m forever grateful for that. 
• Keep a Detailed Pain Journal: This is perhaps your most powerful tool. Track:
  • Pain intensity (on a 0-10 scale)
  • Type of pain (sharp, dull, throbbing, burning, aching)
  • Location of pain
  • Triggers (activities, foods, stress, weather)
  • Relieving factors
  • Impact on daily activities (sleep, work, mood, social life)
  • Medications taken (dose, time, effect)
  • Other symptoms (fatigue, brain fog, nausea)
  • Bring this journal to every appointment. It provides concrete evidence of your experience over time.
• Tracking your pain using a journal is one of the most important things you can do for yourself. Doctors like data, they like facts, and if you’ve been tracking your pain you will be taken more seriously. Tracking your pain also helps you see any patterns that might be forming. I created a two-page pain tracking worksheets that you can get for free if you sign up to my mailing list. Creating that two-page-spread led me to create my Chronic Pain & Wellness Tracker, which is a more comprehensive pain tracker that includes tracking medication, doctors appointments, and treatments. 

To sign up to my mailing list, click this link https://share.hsforms.com/1fpEsIhnKR9Cp6PBYdEW4tgsb0xl and once completed you will be emailed a link to my two-page pain tracking pages as well as a 200 page household planner I created to help maintain your home. 

For a more in-depth pain tracker, my Chronic Pain & Wellness Planner is for sale on Amazon here https://www.amazon.ca/dp/1069213039 

2. Prepare for Your Appointments

Don't go into an appointment unprepared. Think of it like a business meeting where you need to present your case.

• Write Down Key Points and Questions: Prioritize what you want to discuss. List your most pressing symptoms, your biggest concerns, and any questions you have. This ensures you don't forget crucial information, especially if you're feeling overwhelmed or flustered. My Chronic Pain & Wellness Tracker has pages for you to complete that help prepare you for medical appointments, as well as space to summarize what was discussed and what treatments or medications you may be trying. 
• Bring a Support Person: A trusted friend or family member can act as an extra pair of ears, take notes, ask clarifying questions, and provide emotional support. Their presence can also make doctors more attentive. My dad went with me to most of my medical appointments when the kids were in school, and it did help, because he could add his thoughts and what he sees and add details I’ve forgotten to mention. It’s also true that when you bring your caregiver, you are taken more seriously because it’s not just you telling the doctor what is going on, but a second person to back you up and support you, that sees up close what is happening with your chronic pain and how it’s impacting you.
• Dress Comfortably but Neatly: While this shouldn't matter, presenting yourself as well-put-together, even if you're in pain, can subtly counteract assumptions about "attention-seeking" or "malingering." This is unfortunately true too. You are taken more seriously if you look presentable and put together, and as hard as that is to do some days, it’s important because there are assumptions made, even by medical professionals who should know better, about you based on how you look and talk. 

3. Communicate Effectively During the Appointment

How you present your information can significantly impact how it's received.

• Be Clear and Concise: While detail is important, avoid rambling. Start with your most significant concerns. Often we have a lot of other issues that go along with chronic pain that also cause us distress, but you can only deal with so much at one appointment, and only really deal with one or two things at a time. It took me almost 10 years to find the right treatments and medications, because it’s all a process and trying out medications to find one that works takes time. 
• Use Descriptive Language (But Avoid Over-Dramatizing): Instead of "I'm in so much pain," try "My pain is a constant, sharp burning sensation at an 8/10 level, radiating down my leg, and it prevents me from sleeping more than 3 hours a night." When you provide details and data, and descriptive words, a medical professional is more likely to take you seriously, as you’ve put in the hard work noting details about your chronic pain that impact your day to day life. 
• Focus on Function: Explain how the pain impacts your life. "I can no longer lift my grandchild," "I had to quit my job," "I can't prepare meals for myself." This demonstrates the tangible reality of your suffering. This is just as important as noting the details of your chronic pain. I couldn’t work anymore, I could not play the sports I played anymore, and so much about my life changed because of that. As the years passed, my abilities decreased, and that’s had a real negative impact on my mental health.
• Be Respectful, But Firm: Maintain a professional demeanor. You are seeking help, but you are also asserting your right to be heard. If you feel like you are not being heard, get a second, or even third opinion. Your life is worth something, and you are worthy of being taken seriously and receiving compassion and care in your treatment. 

4. Appropriate Comebacks for a Dismissive Doctor

Encountering a dismissive doctor is disheartening, but knowing how to respond can help you regain control of the conversation.

• Doctor: "Your tests all look normal. There's nothing medically wrong with you."
  • You: "I understand the tests haven't revealed a cause, but my pain is very real and significantly impacting my life. I'm here because I need help to find out why I'm experiencing this, or how to manage it. What are our next steps in exploring possibilities beyond these initial tests?"
• Doctor: "It sounds like you're under a lot of stress. Perhaps this is anxiety-related."
  • You: "I appreciate you considering all factors, and yes, chronic pain certainly causes stress. However, my primary concern is the physical pain itself. I'd like to address the pain first, as I believe managing it will also help alleviate any secondary emotional impact. Can we focus on potential physical causes and treatments?"
• Doctor: "You seem to be exaggerating your symptoms."
  • You: "I understand my description might sound intense, but I'm trying to convey the exact level of suffering I experience daily. My goal isn't to exaggerate, but to ensure you fully grasp the severity of my condition so we can find an effective treatment plan." (Then refer to your pain journal or functional limitations.)
• Doctor: "You've been to many doctors. Maybe you just need to learn to live with it."
  • You: "I'm seeking help from multiple professionals because I am committed to finding relief and improving my quality of life. 'Learning to live with it' isn't an acceptable solution when my life is so profoundly impacted. I'm looking for a doctor who is willing to partner with me in exploring all available avenues for treatment and management."
• Doctor: "Have you tried [obvious, basic treatment]?"
  • You: "Yes, I have tried [mention the treatment and why it wasn't effective for you]. I've actually tried quite a few things already, which is why I've kept this detailed record [show pain journal]. I'm hoping we can move beyond these initial steps."

5. What Makes You More Believable or Credible?

Beyond your advocacy tactics, certain behaviors and preparations can subtly enhance your credibility in a doctor's eyes.

• Your Pain Journal: As mentioned, this is gold. It demonstrates consistency, observation, and a serious commitment to understanding your health. It also adds credibility to your symptoms and pain. Your doctor can see in real time, day to day, and get a better picture, if they’ve got the facts in front of them. It’s also helpful because most Pain Warriors have poor memories, and all the details get lost in the chaos, so having a daily written record is paramount to  you receiving the best care possible. 
• Having a Consistent Narrative: Stick to the facts. Avoid changing your story or introducing new, unrelated symptoms at every visit. If you are all over the place, it is less likely you will be taken seriously.
• Being a Partner, Not a Demander: Frame your interactions as a collaborative effort. "What are your thoughts on trying X?" or "I'm looking for a plan that will help me achieve Y goal." It’s important to work as a team, and not go off the cuff demanding something be done, even if you feel like it. It’s also important that you do your own research, so you can bring potential solutions to your doctor’s attention. 
• Show That You've Tried: Mentioning previous treatments (medications, physical therapy, alternative therapies) and their outcomes shows you're not just expecting a magic bullet but are actively engaged in your own care. It’s also important to keep a record of what treatments you’ve done and how they either helped or didn’t, because if you are anything like me, you forget some of what you’ve tried, and when you tried it, which could become important later on. Just a quick summary about each treatment and how they affected you is all that is needed. 
• Avoid Self-Diagnosis (mostly): While you should research, present your findings as questions ("I read about condition X, and some of the symptoms align with what I'm experiencing. Is that something we should consider?") rather than definitive statements. Some doctors feel like they know best, even if they don’t, so it’s important to word things in a certain way. 
• Be Patient, But Persistent: Understand that diagnosis and treatment can be a long road, especially with chronic pain. However, never give up advocating for your needs. If a doctor isn't listening, seek a second, third, or even fourth opinion. Like I said earlier, it took me almost 10 years and hundreds of doctors appointments to get to a place where I felt like my mental health, CRPS and chronic pain were controlled as well as they were going to be. 

Moving Forward

Living with chronic pain is an immense challenge, made even harder by the struggle for validation within a often-misunderstanding medical system. Remember, your pain is unequivocally real, and you are inherently worthy of being treated with respect, compassion, and receiving effective care.

By becoming an empowered advocate, armed with thorough information about your condition, meticulous pain tracking, and strategic communication techniques, you can significantly increase your chances of finding medical professionals who truly listen, believe you, and partner with you on your journey. This partnership is crucial for navigating the complexities of chronic pain management and ultimately achieving an improved quality of life. Never give up on seeking the understanding and support you deserve.