Invisible Illness Awareness Week is from September 9-15, 2013. The purpose of this campaign is to spread information to the public about invisible illnesses and show support for those with such illnesses.
An invisible illness is, as it sounds, one with no apparent outward indicators. This includes a wide variety of conditions: chronic back pain, fibromyalgia, heart disease, diabetes, depression, lupus and many more (some include cancer in this list, although there are often clear physical indicators at advanced stages). Invisible illnesses don’t require the use of assistive devices like wheelchairs or canes. While half of Americans suffer from a chronic condition, and most of these count as invisible, there is still a wide gap between public understanding and reality.
Those hit most hard by this misunderstanding are likely people whose invisible illness involves chronic pain and/or some level of disability. Such people tend to face a lot of criticism, confusion and generally bad advice from friends, family, coworkers and employers. One of the goals of Invisible Illness Week is to help people without invisible illnesses cultivate a better understanding of these conditions.
Talking To Someone With An Invisible Illness
This advice is not designed to put people on eggshells; people with invisible illnesses are people first and foremost, and shouldn’t be treated as a different species. But the last thing you, as a caring friend or family member, want to do is accidentally make things harder for someone already struggling. This advice is designed to dispel some common misunderstandings that lead to hurtful, condescending and annoying conversations that people with invisible chronic pain conditions are all-too-often subjected to.
1. Motivation isn’t always the issue. It’s true that attitude and activity have a substantial impact on a person’s quality of life and prognosis, but a smile and all the will power in the world isn’t going to cure most chronic pain or disability cases, and sometimes being active just isn’t possible. While it’s nice of you to be encouraging and to propose activities to do with your friend, family member, etc. with an illness, don’t push it too hard. Before you know it, you may end up insinuating that his or her illness is his or her fault for not having a good enough attitude about it or not trying hard enough. This will not only be far from the truth, but will pose a strain on your relationship as well.
2. Chronic pain conditions are often inconsistent; pain may be unbearable one day and quite tolerable the next. Be flexible; cancelling plans isn’t always a sign of flakiness. Talk with your friend, family member etc. and hear them out. Reasons aren’t always excuses.
3. Go easy on the alternative medicine advice. It’s true that there are a plethora of natural treatments out there from herbs to motion therapies that have been helpful to some people. If you feel you really have an idea that may help someone, then share it….gently. If you start talking about an herbal supplement or essential oil as though it were a universal cure for chronic pain and disability, that can come across as a bit insulting to the person and the extent of their illness. Pitch your ideas, if you have them, for what they likely are: something that may help a little sometimes. Make sure you actually study your suggestion, too; having research to share or a firm grasp on the theory behind a treatment makes you less of a peddler of empty promises.
4. It’s best not to express surprise or disbelief at how healthy a person with an invisible illness looks. Across the board, from forums to official advocacy websites, the #1 complaint of people with invisible illnesses is when people say, “But you look great/healthy/fine!” This can lead to a range of bad feelings in the recipient, from “I wish I felt fine” to “Are you saying that I’m making it all up?” It’s always nice to give a compliment, but try not to frame it in terms of the illness.
These four tips should help you help the person close to you with an invisible pain condition. By expressing yourself in an understanding way, you will show the person that you care and are there to offer support.
Check out invisibleillnessweek.com for statistics, advice and information about Invisible Illness Week.
In the next post, found at http://backpainsolutionsonline.com/back-pain-management/invisible-illness-week-maintaining-social-relationships, we’ll look at some ways in which people with an invisible illness can help spread awareness and understanding. Chronic pain and other conditions are hard enough to deal with; let’s try to diminish unnecessary social strains and emotional consequences by replacing ignorance with knowledge.