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Living With An Invisible Illness

Reviewed by: HU Medical Review Board | Last reviewed: June 2016.

Irritable bowel syndrome (IBS) is a chronic and frustrating disease with fluctuating symptoms. Many of those symptoms are difficult to talk about, and from the outside, it may appear that there is nothing wrong. Family and friends may not understand the severity and impact the symptoms have on your daily life, and their lack of understanding can be an additional blow.

With conditions like IBS that are “invisible,” many patients feel guilt and embarrassment when they are repeatedly told they look and sound fine.1 People with IBS may feel like it’s their fault, especially when they are told that stress worsens the symptoms and that they should “handle it better.” It can be helpful to find a counselor or support group to talk to and recognize that the condition isn’t your fault.

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Some patients also experience a lack of understanding from their health care providers, which again makes them feel like it’s their own fault. If this is your experience, educate yourself on IBS and find a physician who will partner with you. It may take trying different providers before you find the right one. Resist the urge to make this mean that you’re wrong. Trust yourself and your body and find the help you need and deserve. You may also find it helpful to keep a symptom diary to share with your health care provider, as it can give you a record of the frequency and severity of your symptoms.

With the fluctuating nature of IBS, there may be times you feel fine and can engage in normal activities, and other times when your symptoms are too debilitating and severe to leave the house. It is important to honor your body’s needs and communicate your needs to family and friends as best you can. The burden of those with chronic conditions like IBS is to make the invisible visible to others, by educating them about the disease. Others may not completely accept the impact your condition has on you, but by taking steps to raise their awareness, you will have done everything you can to change their perception. The rest is on them.1

The kindest thing you can do for yourself is to cultivate compassion for yourself and your suffering. If you can treat yourself with kindness and compassion, others are more likely to also do so. Shifting from frustration with your body or blaming it for these symptoms to a place of compassion and acceptance brings more inner peace, and it stops the internal war.