Challenges of Having an “Invisible” Illness

Living with an AxSpA spectrum condition can be challenging at times, especially if you look “normal” or “healthy.” When an illness doesn’t have outwardly visible signs, it can be particularly challenging for other people to understand what you are experiencing.

The US Department of Health and Human Services estimates that there are approximately 157 million Americans living with a chronic illness, and the US Census Bureau estimates that 96 percent of chronic illnesses are invisible.¹

What are “invisible” diseases or illnesses?

An invisible illness is an illness that does not have visible signs or symptoms of disease. Whereas someone with cancer might lose their hair or have a visible port, an invisible illness (which does include certain kinds of cancer) has no signs that someone else would be able to observe. This means that someone who may be very ill with an invisible disease looks perfectly ordinary, leading others to not understand why they aren’t able to participate in activities or why they might find certain activities challenging.

AxSpA spectrum conditions are invisible diseases because if you don’t have a hunched over spine, outwardly, people see nothing out of the ordinary.

What are some challenges of living with an invisible disease?

You might find that you feel embarrassed or angry if you can’t participate in some activities, especially if you used to participate in them. If people ask why you’re not participating, you might resent that you feel you have to share your diagnosis or owe them an explanation (you don’t!).

Many people make assumptions about invisible illnesses, such as the person is exaggerating the disease or it’s “all in their head.”¹ This is simply not true; many illnesses and diseases, especially chronic ones, are invisible and very real. People may say “But you look so good!” “Looking good” is not an indication of health, and it is very possible to look “good” while still struggling with daily activities of living or while in chronic pain. Struggling with chronic pain can affect mood and interpersonal relationships, especially if others forget you are living with an invisible disease.

Chronic illness can affect your career, your home life, and everyday life in general. It can be an added stressor because invisible diseases don’t often get the support or assistance that more visible illnesses get. Invisible symptoms like pain and fatigue add to the difficulty of getting through the day, and you may be at risk for mood disorders.²

Coping with an invisible disease

It’s important to have a variety of coping skills when living with a chronic disease, but especially an invisible chronic disease. Some coping tools you may use include:²

• Finding a support group: this can provide a social network of people who understand what you’re going through, as well as provide practical information about living with your condition.
• Counseling: sometimes we need extra help and someone to help us through difficult times; this is nothing to be ashamed of.
• Talking with your doctor: be honest with your doctor about how your AxSpA spectrum condition affects your life – all parts of it. By sharing difficulties you’re experiencing, they can then work with you in addressing challenges or problems, and work on finding solutions that will improve daily activities and quality of life.
• Surround yourself with supportive people who understand what you’re going through.
• Be gentle and kind with yourself.