Six Steps To Supporting Family And Friends With An Invisible Illness

In the UK almost 1 in 5 of the working population live with some type of disability according to government statistics, and a US survey found that 74% of those with disabilities do not use wheelchairs or any other visible aids. Invisible illnesses can range from an acute flare-up to more long-term conditions, and can be physical or psychological (or both!).

So how do you deal when you find out a friend or family member has an invisible illness? It can be tough to know what to say and how to act, especially if you don’t fully understand what they are going through. This guide will give you a few starting pointers on how to be a supportive ally to the invisible illness warrior in your life.

Believe Them And Listen

Invisible illness is sneaky. It can cause great pain and distress to the person living with it without ever making itself visible to others, often leading to confusion, assumptions, judgements or outright rejection from others. The important thing is that when they tell you about their condition you believe them - just because you can’t see what is causing their suffering doesn’t mean it isn’t there.

It is difficult to hear that someone we care about is in pain, particularly if the condition sounds unfamiliar and scary. Being overly positive can come across as flippant, so try not to force optimism. Be wary of going too far the other way though: now is not the time to share horror stories you might have heard about the condition! If in doubt, ask them how they are feeling and simply listen.

Don’t Worry If You Mess Up: Just Own It

Even if you tread carefully you might still slip up and say something awkward. No matter how much we try to say the right thing, a combination of past experiences, existing prejudices, fear and confusion can result in a case of foot-in-mouth, with even the most diplomatic of people. Don’t beat yourself up over it, you’re only human after all!

If you do happen to inadvertently say something insensitive or unhelpful, the best thing you can do is apologise rather than breeze over it. Put your pride aside and be straight with them, even a simple “sorry, I wasn’t thinking” can make all the difference. The person with the invisible illness will appreciate your honesty and humility, and your bond may even strengthen as a result.

Do Your Research

A lot of invisible illnesses are obscure and misunderstood, and even if a condition is well-known there can be many myths floating around. It can help to educate yourself as much as possible and read up on the illness that your friend or family member has, and what support might be available to them.

The internet is a vast resource, it is also however full of much misinformation so make sure you weed out the nonsense and extract the facts. Some good starting points are national health organisations (NHS, Bupa, etc) for a general overview and signposting to other resources, and charities that specialise in a specific condition for more in-depth information.

Don’t Become A Know-It-All

Research is great and will give you a better understanding of the illness, especially with so many resources out there. However, be careful not to stray into the murky waters of giving the invisible illness warrior in your life unsolicited advice based on your findings. The purpose of learning about the illness is to give you insight and perspective, not for you to find the cure.

Chances are they’ve read the same information (if not more), so regurgitating it might make them feel patronised. If you think you have found something that would really benefit them, recognise their existing knowledge and ask instead of tell, i.e. “You’ve probably already read it, but I found some information on [issue]. Would you like me to send you the link?”

Be Mindful Of Social Activities

The person in your life with an invisible illness may have a variety of barriers limiting their daily activity, from physical pain to psychological anxiety. It may not always be possible for them to participate in social events, don’t take it personally when they turn down several invitations in a row or skip out every other night out, they’re just working within their limits.

If your friend or family member does decide they can come out, be mindful of any additional needs they may have. Walking too far might cause them physical pain for example, or crowds might cause an anxiety attack. It’s always good to have a few appropriate venues in mind that allow everyone present to feel comfortable and have fun.

Don’t Forget Them!

Even if you haven’t seen them in a while, the person with the invisible illness is still very much there. In fact, they will probably feel quite isolated if their condition limits their ability to socialise and go out. Even if they can’t do the things you’re used to doing with them or others, it’s important to make an effort to stay in touch.

It’s still very much possible to have a thriving friendship with an invisible illness warrior, it just might take a different form to bottomless prosecco brunches or girly nights out. Little things like regular phone calls, messages, group chats or even a casual night in with some good food and films will help them to feel more connected to others and lift their mood when times are tough.

Written by Jane Emily, who can be found as @red__inspired on instagram and Twitter.