Let’s Help You Understand Your Invisible Illness More

By Tori Etheridge, BKin, MPT, CN-NINM Therapist, Lead Research Physiotherapist, Healthtech Connex. Originally posted on Pain BC.

An invisible illness is one that is unseen to the naked eye. People in pain often have a difficult time explaining their pain to loved ones because, on the outside, they still look the same. Without any obvious signs of physical injury (such as a cast, using walking aids or having visible scars) it may be difficult for people to understand that there is still something serious happening inside of your body.

This lack of understanding can create even more stress when your family and friends have expectations that are no longer in line with your abilities, energy levels and tolerance. Sometimes, trying to explain your circumstance to family and friends can be exhausting in itself, so you may either push through and overdo it, which can result in serious flare-ups, or pull out of activities all together and begin to feel socially isolated. You may express feelings of pain through facial expressions or changes in posture as a way to avoid explaining what is going on; as a result, this may alter their mood in a negative way. You may also feel your mood impacts those around you, leading to feelings of tension, guilt, and inauthenticity. Pain science shows us how our mood and negative emotions can further increase the level of pain we feel.

So, what can you do to help others understand your invisible injury or illness? Educate others about your condition.

1. Briefly explain chronic pain to them

A simple explanation can go a long way in helping to explain your condition. An example: “I have a condition where my brain doesn’t receive pain messages from my body properly, and as a result I feel pain all the time and it is especially influenced by activity, fatigue and a lack of sleep.” Your willingness to talk about your pain and the challenges you face may help you in becoming more accepting of your condition, feel more in control and grow stronger as a result. This discussion will also help loved ones to understand your limits, as well as what they can do to help you. If you find it difficult to communicate your experience with pain, you can show family and friends this brief video instead.

If you are looking to share in-depth knowledge on the topic of chronic pain, consider reading Explain Pain by David Butler and Lorimer Moseley (this book is available for free in most BC public libraries).

2. Bring your loved ones to appointments

Having health care professionals validate your pain experience can be impactful not only for your sake, but for getting loved ones to better understand your illness and how to support you as well. Bring a loved one along to your health care appointment(s), and encourage them to ask your provider questions.

3. Make your limits known

To aid in your own healing, it’s important to avoid over-committing and setting yourself up for a roller coaster of flare-ups. Make it known to family and friends that with this condition, you may experience limitations with the level and duration of physical activities in which you can engage. Educate loved ones about the fluctuations in your pain and how this variation may mean that you can only commit to a certain part of an event or that you may need to wait until the day of the event to make a decision on whether you can attend. By being upfront about your situation, it will take away some of the stress, pressure and guilty feelings that may otherwise be experienced. By verbalizing your limitations, you can help you set appropriate expectations for others and yourself. 

Living with an invisible injury can be an isolating experience. It’s important to create a support network to help facilitate your pain management. Communicating in this specific way will help your loved ones understand your limits.

4. Surround yourself with facilitators not fixers

Not all health care providers have in-depth knowledge about chronic pain. Aim to surround yourself with practitioners who see their job as facilitators, rather than “fixers.” Find people who empower you to take control of your chronic pain, rather than making you feel like you need to rely on them. Many people with chronic pain meet “fixers” and this can lead to false hope and over-reliance. Some practitioners may not fully understand chronic pain and may make you feel your illness is “all in your head.” If you find that your provider’s thinking or language doesn’t align with yours, or if they aren’t effectively supporting you in managing your pain, don’t be afraid to find someone new. It’s important to have the right people on your team to facilitate your self-management and support you along the way.