Written by: Amanda Phillips

If you're living with a chronic illness, you know that some of the most debilitating symptoms aren't visible to the outside world. Whether it's fatigue, brain fog, or chronic pain, these "unseen" symptoms can take a major toll on your life—even though others, including your doctor—may not see them. These are invisible symptoms, and explaining them to any doctor may be extremely hard, especially when someone has already experienced disbelief or misunderstanding. At the same time, self-advocacy and making sure the doctor understands what you're going through is crucial for getting proper care.

In this article, we will look at why it is so important to make these unseen symptoms known, and we will give you some strategies that will help you explain to your doctor what has been going on.

Why Unseen Symptoms Are So Important to Discuss

Some symptoms, such as pain or fatigue, may not be visible to others and are easily hidden from your health professional, loved ones, or even yourself. But symptoms hidden from view are no less real and no less legitimate than the physical manifestations of illness that anyone can see. If you don't speak about them, then your doctor will not know they are happening; therefore, they will not be managed appropriately.

How Untreated Symptoms Can Affect Your Quality of Life

These are symptoms that others cannot see, like chronic fatigue or brain fog, which can make simple tasks difficult to execute. Even when you look perfectly fine, you might feel as though you're barely surviving. Symptoms, if left untreated, can seriously impact your quality of life at work, socializing, and even in taking care of yourself. Discussing these issues with your doctor is important so that they can help you find ways to cope with them.

The Risk of Being Dismissed or Not Understood

Unfortunately, many people with chronic illnesses experience moments of feeling belittled or misunderstood by medical professionals. Since these symptoms aren't physically apparent, some doctors may not take them seriously or may attribute them to anxiety or stress. This can lead to frustration and helplessness, which may affect your ability to get the care you need. That's why effective communication is essential.

How to Talk to Your Doctor About Unseen Symptoms

Talking about invisible symptoms can be tough, but there are several strategies that can help you better advocate for yourself during doctor's visits. Here are some practical tips to make sure your voice is heard:

1. Keep a Detailed Symptom Journal

One of the best ways to communicate what you're dealing with on a day-to-day basis is by tracking your symptoms. Tools like the IBD Journal allow you to document details about your symptoms, such as when they happen, how severe they are, what your triggers may be, and how they affect your life. When your doctor is presented with tangible evidence, you're painting a clearer picture of what's going on with your health.

Try recording in your journal things like:

• Times of day when symptoms are worse
• How symptoms affect daily activities (e.g., "I can't concentrate at work because of brain fog")
• Possible triggers, such as food, stress, or lack of sleep
• Symptoms' duration and any patterns of change

2. Be Clear and Specific About How Symptoms Affect Your Daily Life

When describing your symptoms to your physician, avoid general comments like "I'm always tired" or "I just don't feel right." Instead, be as specific as possible about how your symptoms are affecting your life. For example, instead of "I'm tired," say, "I'm so fatigued that I have no energy to even get up in the morning, and I am unable to do simple tasks." This helps your doctor understand the severity and impact of the symptoms rather than just acknowledging their existence. Overshare information.

3. Ask the Right Questions to Ensure Your Concerns Are Heard

It can be easy to feel rushed during a doctor's visit, especially when you have many symptoms. Asking the right questions can help ensure your concerns are being addressed. Consider asking:

• What could be causing these symptoms?
• How can we manage these symptoms on top of my main diagnosis?
• Could lifestyle changes or treatments help with fatigue, brain fog, or pain?
• Is there something we can do to improve my quality of life with these symptoms?

4. When to Seek a Second Opinion

Sometimes, even when you've done everything right—monitoring your symptoms, communicating well, and asking questions—your voice might not be heard. If your doctor dismisses your concerns and doesn't seem willing to explore treatment options for your invisible symptoms, it might be time for a second opinion. Seeking a second opinion is about ensuring you have someone on your health team who understands the full scope of your illness, both seen and unseen.

5. Phone a Friend

Sometimes, having someone come with you to appointments gives you back-up. Empower them to question what the doctor says. Empower them to speak on your behalf. They can be your voice if you are not good with confrontation. 

Conclusion: Empower Your Voice

Living with chronic illness is hard enough, and symptoms that are unseen—like fatigue, brain fog, or chronic pain—further complicate the journey. Just because these symptoms aren't visible doesn't mean they're any less real, and speaking up about them during doctor visits is crucial.

The most important way to make sure your voice is heard is by keeping a detailed symptom journal, being specific about how these symptoms affect your daily life, and learning to advocate for yourself. And if necessary, seek out a doctor who listens and supports you. Your symptoms, whether visible or not, deserve attention, and you deserve care that addresses every part of your chronic illness journey.