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The Look Good, Feel Bad Disease: Understanding Invisible Illness

Maryam Henein, the co founder of HoneyColony calls it the ‘look good feel bad disease.’

On the outside a person may seem perfectly healthy, but we may not realize that this person is struggling through every day of their lives because of an illness that is not evident to others. Invisible illness sufferers often have their pain compounded by a lack of understanding from their immediate circle, and can find it hard to explain the difficulties they find with completing common tasks on a daily basis.

When you suffer from an illness such as lupus or fibromyalgia, which is not evident to the naked eye but drastically impacts your day-to-day life, it can be hard to accurately convey the extent of such pain to others.

Christine Miserandino, a lupus sufferer who coined the famous Spoon Theory in 2003, summed it up best when she said “I hate when people say ‘Oh, I know what you’ve been through’ or ‘I know how you feel’. The sentence usually starts with those words and ends with a tale of a broken leg, or a bad back, or a particular horrible flu. Try having them all at once every day, then tell me you know how I feel.”

For people like Christine who suffer from invisible illness, the pain of the condition itself can almost be matched by the emotional turmoil of the ignorance of those who dismiss such illnesses as being primary psychological. It isn’t just the general public who are guilty of this, either; many medical professionals can be equally blinkered when it comes to dealing respectfully with invisible illnesses.

Research from the nonprofit Dysautonomia International shows that only six percent of invisible illness patients are accurately diagnosed by the first doctor they consult. More than one in four visit at least 10 doctors before being diagnosed, with eight percent consulting more than 20 doctors without an accurate diagnosis.

Going back to Christine and her Spoon Theory, this has been heralded as the most striking portrayal of the world of an invisible illness sufferer to those with no such health concerns. She used 12 spoons as metaphors to illustrate how she can handle a dozen basic tasks (e.g. getting dressed, going from one place to another) in a day before being physically unable to do anything more. Think about everything you do in one day and consider what it would be like to have the physical capacity to do only 12 basic tasks.

Gives you a new-found sense of perspective, does it not?

The pain felt by an invisible illness sufferer can be substantially eased or compounded depending on the words and actions of others. If there’s one phrase that a sufferer of lupus, fibromyalgia or rheumatoid arthritis hates to hear, it’s “Oh, but you don’t look sick!”. The person knows that already; what they need is some empathy, or an offer of practical assistance. Dismissive remarks such as “It’s all in your head”, “Maybe you should start a diet”, or “Stop worrying, you’ll be fine” are all highly insulting and hurtful to a person with invisible illness.

On the other hand, if you responded to their description of how they feel with words like “Let me help you in whatever way I can” or “I’m sorry to hear that. I’d like to understand a bit more about how you feel”, they will hugely appreciate such consideration. Even better, try to suggest a few ways in which you can offer practical help. Cook dinner for them. Do their grocery shopping. Clean their home. Even ask them if they can think of any way in which you can help. What may come as a routine, easily manageable task for you is often a substantial weight off their shoulders.

The infographic below by UK chronic pain charity Burning Nights aims to shed some light on how it feels to suffer from an invisible illness, and indeed what it is like when people fail to realize the extent of your suffering. The attitude of healthy people towards those suffering from lupus, fibromyalgia, et al can go a long way towards making a person’s day or parking an additional cloud of despair over their head.

Understanding Invisible Illness

Look Good Feel Bad Disease

Victoria Abbott-FlemingVictoria Abbott-Fleming is the founder of a UK-based chronic pain charity called Burning Nights. The organization gained official charity status in April 2016 and promotes awareness of CRPS by attempting to establish a support network for people with the condition. She has also written books on the subject and she is regarded as a leading advocate for CRPS support within the UK.

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