Living With Invisible Pain

Many people who live with chronic illness and pain conditions look pretty good from the outside. They may be well dressed, well groomed, and appear to friends and family to be healthy. But on the inside, many patients feel painful, ill, exhausted, depressed, and anything but healthy. What are some of the challenges patients experience when her outside appearance doesn't match how she really feels?

What is Invisible Pain? 

Invisible pain a type of pain that doesn't have any obvious signs or symptoms that are noticeable to people other than the patient. There's no wound, abrasion, bruise, or incision that indicates to the outside world that the person is in pain. Invisible pain is the kind associated with chronic diseases like fibromyalgia or arthritis. It's extremely obvious to the person experiencing the pain, but not to everybody else. 

In an article entitled The Challenges of Living with Invisible Pain or Illness, written by Toni Bernhard, J.D. and published in September 2011 in the Psychology Today column, Turning Straw Into Gold, Bernhard discusses some of the issues she learned to deal with as a patient who simply didn't look sick.

Guilt, Embarrassment, Isolation

Bernhard explores how many people who live with invisible illnesses and pain experience guilt, embarrassment and isolation. As citizens in a world where illness is viewed as a personal failure, it's not uncommon for patients to feel like they're letting their family, friends, community and themselves down. Bernhard writes, "We live in a culture that worships at the altar of wellness...Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better." When that "get better" part doesn't happen though, patients feel embarrassed and guilty. As friends and family get tired of waiting for the patient to get over it, they might drift away from their relationship, which leaves the patient feeling isolated.

Judgment and Labels

It's difficult for healthy people to understand what it's like for someone who's sick, but appears well. It's also difficult for patients to withstand the criticism, advice and expectations of others. In addition to what the feedback they receive from friends, family and coworkers, many chronically ill patients suffer from misinformed and judgmental medical care. Doctors may see their patient as drug seeking or write their illness off as "all in their head." This may make legitimately painful and ill patients avoid seeking much-needed medical help to avoid being mislabeled and judged.

Outside Appearances

Bernhard mentions many patients face dilemmas in how to present themselves to the world. If they show up at an event in their sweats, looking like they've just rolled out of bed, then other people "get it" that they're not feeling well. If the patient goes to some trouble, however, to get dressed and put her best foot forward, other people might falsely assume she's well now and have expectations of her that she simply can't fulfill. People may not understand that the consequence of showing up and participating in events may lead to the patient's need to collapse and recover afterword.

It's not just the patient who faces challenges either. Caretakers carry enormous burdens as they attempt to meet the physical, psychological and social needs of their spouse, parent or friend. The emotional toll this takes results in depression, exhaustion and other conditions for caregivers too.

What can you do to bridge these challenges?

  • Consider attending support group meetings designed specifically for people with your diagnosis or circumstances.
  • Seek medical care from specialists with experience treating your condition.
  • Talk to family, friends and coworkers about your condition and inform them that you're making an effort to present as well as possible. Ask them to understand this may mean you need to rest frequently and may not be able to participate fully.
  • Do all you can to support your wellness by exercising regularly, eating properly and reducing stress.

Dr. Nathan Wei, MD reviewed this article.


The Challenges of Living with Invisible Pain or Illness
Caregivers and those they care for often live in an invisible world.
Published on September 28, 2011 by Toni Bernhard, J.D. in Turning Straw Into Gold

National Fibromyalgia and Chronic Pain Association