Living with chronic pain or illness can often feel like carrying an invisible weight—a burden that others may not fully understand. For many of us, the journey toward getting proper care begins with that first doctor’s appointment. It’s daunting, especially when you’re not sure if your symptoms will be taken seriously. You might feel overwhelmed, frustrated, or even defeated, but this is the moment where you can begin to take control of your health and advocate for yourself. Here’s a guide to help you prepare, explain your pain, ask for the right referrals, and handle difficult situations like being told “all tests are normal” or “there’s nothing we can do.”

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1. What to Bring to Your First Appointment

It can be nerve-wracking to walk into a doctor’s office when you’ve been dealing with chronic pain or an illness for so long. It’s hard to know what to expect, but one thing you can control is how prepared you are. Here’s what to bring:

• Medical Records: If you’ve seen other doctors, specialists, or had any treatments in the past, bring copies of your medical records. This can include test results, imaging (X-rays, MRIs, CT scans), and any previous diagnoses. Even if they don’t seem directly related, it’s important to paint a full picture of your medical history. I usually keep a binder and I keep everything aside for when I have new appointments. For when I am seeing my regular doctors I just keep a summary of what has happened between the last appointment and the one you are meeting them with. A lot of times they are grateful that you have everything documented.
• Symptom Journal: I know it can be exhausting to keep track of every detail, but this is a powerful tool. Write down when your pain or other symptoms started, what triggers or worsens them, and any patterns you notice. Include how the pain impacts your daily life—whether it’s making work harder, interrupting your sleep, or affecting relationships. This can help your doctor see the bigger picture beyond just the “medical facts.” I enjoyed doing a symptom journal but with the symptoms always changing. It is hard at times to keep it going. Sometimes you’ll have a variety of symptoms that make no sense and other times you’ll have symptoms that are consistent. And other times you will have nothing at all. So keeping a general symptom tracker I find is really important but not something that is a day-to-day.
• List of Medications and Treatments: Include everything you’re taking, from prescription medications to over-the-counter treatments, herbal remedies, and any alternative therapies (like acupuncture or massage). Make note of any side effects you experience. This helps your doctor assess the full scope of your treatment. This is where I mess up a lot of times. I never remember what medication I have taken, or antibiotic or when. A lot of times I am just like you know the orange pain killer from last week.
• Family History: Many chronic illnesses, from autoimmune diseases to certain cancers, can run in families. Having a clear record of your family’s health history can give your doctor insight into potential hereditary conditions. I find I keep this information with me quite often but a lot of the times doctors look at the age of their patient and say things like you are too young, no need to worry about this yet. I always have the list with me and in the last 5 years I think I have only been asked once about this. And the second time I was telling the doctor the symptoms I was having and added in that it is related to my family history.
• Questions or Concerns: It’s easy to forget what you wanted to ask in the moment, especially when you’re nervous. Write down any questions you have—about your symptoms, treatment options, or anything you’re unsure about. Don’t leave the appointment feeling unheard. Honestly for every appointment I have a page of questions. I relate symptoms and information to it based on tests and it has made the transition easy and it ensures you don’t forget anything you want to discuss with the doctor. Especially in certain areas where appointments are few in between to get it.

2. How to Explain Your Symptoms

Describing chronic pain isn’t as simple as just saying “it hurts.” Pain is complex, and it can feel hard to put into words, especially when it seems like no one truly understands what you’re going through. Here are some tips for explaining what you’re feeling:

• Describe the Pain in Detail: Use words like sharp, dull, aching, burning, or throbbing. Be specific about the intensity—on a scale of 1 to 10—and how long it lasts. Does it come and go, or is it constant? These details help create a clearer picture of what you’re experiencing.
• Location: The pain may not always be where you expect it to be. If it radiates or spreads, make sure you point out the areas it affects. Some people may experience pain that starts in one place (like the back) but spreads to other parts of the body (like the legs or shoulders). Don’t leave any part out.
• Triggers and Relief: Mention any activities or factors that make your symptoms worse—like exercise, weather changes, stress, or even specific foods. Similarly, tell your doctor what helps ease your pain, whether it’s rest, heat, cold packs, or certain medications.
• Impact on Your Life: Chronic pain or illness doesn’t just affect your body—it affects your mind, emotions, and daily activities. It might be difficult to talk about how it’s influencing your work, relationships, or social life, but it’s important for your doctor to know. They need to understand that this is more than just physical pain; it’s a constant struggle that takes a toll on your whole life.

3. Addressing the Emotional and Mental Health Impact

Chronic pain or illness doesn’t just affect the body—it also has a profound emotional and mental health impact. It can cause stress, anxiety, depression, and feelings of isolation, especially when the pain feels invisible to others. Acknowledging this emotional toll is an important part of your healthcare journey.

• Seeking Therapy or Counseling: Talking to a mental health professional, particularly one who specializes in chronic pain or illness, can help you process the emotional weight of living with pain. Cognitive behavioral therapy (CBT) has been shown to be especially helpful for managing chronic pain and mental health challenges.
• Mindfulness and Coping Mechanisms: Mindfulness, meditation, and breathing exercises can be powerful tools for managing both emotional and physical pain. These practices can help you reduce stress, manage anxiety, and improve your overall sense of well-being.
• Dealing with Stigma: Chronic pain, especially when it’s invisible, can come with a stigma. People may not understand the extent of your suffering, or you might face skepticism about the validity of your pain. Finding supportive communities—whether online or in person—can help you feel less isolated and more empowered. Always advocate for yourself and never listen to the negativity. I started this blog to share what I go through as a person and what we go through as a community. Hoping to get some others to understand.

4. Different Types of Referrals to Consider

When it comes to chronic pain or illness, a general doctor might not always be able to give you the answers you need. This doesn’t mean your pain is less valid—it just means you may need a specialist’s input. Here’s a breakdown of common referrals you may need to ask for:

• Rheumatologists: If you have autoimmune conditions or inflammatory diseases like arthritis, lupus, fibromyalgia, or spondyloarthritis, a rheumatologist is the specialist to see. They can help manage symptoms, adjust medications, and provide treatments that target the root causes of chronic inflammation.
• Pain Management Specialists: Pain management doctors are trained to treat complex, ongoing pain. They can offer a combination of medication, physical therapy, injections, nerve blocks, and alternative therapies to help you manage chronic pain better.
• Neurologists: If your pain involves nerve-related issues (like neuropathy, fibromyalgia, or even unexplained headaches), a neurologist is the right expert to assess and guide your treatment. Absolutely especially with certain symptoms like memory fog, memory loss and headaches. You might as well be sure it’s nothing dangerous.
• Physical Therapists: Chronic pain often leads to weakness or dysfunction in certain areas of the body. A physical therapist can help strengthen muscles, improve mobility, and teach you how to avoid movements that might worsen your pain. They may also help you manage pain without heavy reliance on medication. I never found physio was the best for me but for a lot of others I know it helps. This is why I have kept it in here.
• Psychologists or Pain Psychologists: Chronic illness is often accompanied by emotional and mental health challenges like anxiety, depression, or stress. Speaking with a therapist who specializes in chronic pain can help you develop coping strategies, manage stress, and improve your emotional wellbeing. I do advise people to see someone if they need too. I have a lot of trouble opening up to people. So for me this is not something I have done yet but should probably add to my list in the future.
• Dietitian’s or Nutritionists: If your symptoms seem linked to food or digestion (common with autoimmune diseases or gut-related issues), a dietitian can help you develop a diet that minimizes inflammation and improves your overall health. I recommend everyone to see a nutritionist. Whether or not they have a chronic issue. So many people are missing so many essential things in their body and it is based on the fast food and the easier things to buy. I know it can be expensive to see one but a lot of insurances cover it and if it is recommended by a doctor usually it is covered.

5. Exploring Alternative and Complementary Treatments

While conventional treatments are essential, many people with chronic pain find relief from alternative and complementary therapies. These treatments can provide additional benefits alongside traditional medical care:

• Acupuncture, Massage Therapy, or Chiropractic Care: Many people with chronic pain turn to these therapies to help manage pain, release tension, and promote relaxation. I absolutely advocate for this. I personally trust Chiropractic Care, Athletic Therapy, physiotherapy and acupuncture.
• Supplements or Herbal Remedies: Certain supplements, like turmeric, omega-3 fatty acids, or CBD, have been reported to reduce inflammation and pain. Always consult your doctor before trying new remedies to avoid any potential interactions. I do agree with this but ask your doctor to supply you based on your blood test. If you are going with the easy things to grab of the shelf there is a chance you can get too much of a supplement which is almost as bad as getting little of it. When you ask a doctor to prescribe it they will give you the dosage you need based on your results.
• Mind-Body Techniques: Practices like yoga, Tai Chi, and meditation can help improve flexibility, strengthen muscles, and reduce stress. These techniques are often used as part of a holistic approach to chronic pain management. I think this is crucial. Keeping your body loose. I am not saying go run marathons or workout until you collapse. Just movement helps the flow of circulation etc.

6. Advocating for Yourself: Taking Control of Your Health

When you live with chronic pain or illness, self-advocacy becomes a vital skill. Too often, people with chronic conditions are dismissed or told “it’s all in your head,” but your pain is real. Here’s how to make sure your needs are addressed:

• Speak Up About Your Needs: If you feel like your concerns aren’t being taken seriously, don’t be afraid to speak up. Let your doctor know how much the pain is affecting your life and explain that you’re not looking for quick fixes—you’re seeking a long-term solution.
• Ask for What You Need: If the doctor suggests a course of treatment that doesn’t feel right to you, ask about alternatives. For instance, if pain medication isn’t working, ask about other treatments like physical therapy, acupuncture, or injections. I will always say if a doctor says no. Tell them to write in your report they refused it. Usually they will give it to you. If not make sure it is written and if anything happens you have back up that it was requested and denied.
• Request a Referral: If you feel a specialist’s input is necessary, don’t hesitate to ask for a referral. You have every right to seek expert advice and explore all treatment options. I’ve been told No for referrals by a doctor but there are other doctors out there who will gladly give you the referral you need. Even if it is in a clinic. Usually those doctors want you to move on to the next one so it is easier to get the referral that way.
• Follow Up: Don’t let your health concerns get brushed aside. If something doesn’t feel right or if you don’t get the answers you need, schedule a follow-up appointment. Persistent advocacy is key to making sure you get the care you deserve. Always follow up and if you don’t hear back in a good amount of time, follow up. Sometimes things get lost or mixed in with different papers. Shit happens. But know what you need and the estimated time to get it.

7. What to Do If Blood Work Comes Back “Normal”

It’s incredibly frustrating to hear that all your blood work is “normal” and yet you’re still dealing with debilitating pain. It can feel like you’re being told your pain doesn’t matter, or worse, that it’s all in your head. But just because lab results come back clean doesn’t mean you’re not in pain.

• Don’t Settle: If you’re told that your tests are normal but your symptoms are real, push for further investigation. Ask about additional testing or referrals to specialists who may be able to look at your situation from a different perspective. I have always told people that if they are not happy continue finding a doctor who will listen and help them. It has taken me a long time to build a good medical team.
• Second Opinions: If you feel like you’re not being heard, don’t hesitate to seek a second opinion from another healthcare provider. Different doctors have different approaches and experiences, and you deserve to find one who listens to your concerns. I always tell people to get second and even third opinions. Especially if the symptoms concern you. Until you have a definite idea of what is causing them you never know what they are related too.

8. Building Your Support System

Living with chronic pain can be incredibly isolating. Building a support system is essential to coping with your condition. Here’s how to start:

• Talk to Loved Ones: Communicate openly with your family and friends about your condition. Let them know how they can support you—whether it’s helping with physical tasks or just being there to listen.
• Join Support Groups: Finding online or in-person support groups can help you connect with others who truly understand what you’re going through. These groups provide a space to share your struggles, ask for advice, and get encouragement.
• Work with a Case Manager: If your healthcare system offers case managers or patient advocates, take advantage of their services. They can help you navigate your care, coordinate appointments, and ensure that you’re getting the treatment you need.

Conclusion

Navigating the world of chronic pain and illness can be a long, frustrating road, but by preparing for appointments, advocating for your needs, and seeking the right specialists, you can take control of your healthcare journey. You deserve to have your pain acknowledged, your concerns taken seriously, and your voice heard. The road to feeling better may be challenging, but with persistence, you’ll find the care and support that work for you. You’re not alone—there is hope, and your story deserves to be heard.