Living with an invisible illness or disability can feel very isolating. As your condition cannot be seen, it is hard for others to know about the challenges you live with. This means that they will not know to take into account any impacts your condition has, such as fatigue, chronic joint pain or anxiety.

It is really important, for both your physical and mental health, to honour the boundaries and triggers you know affect your condition and to ask for help if or when you need it. But it can feel scary, talking about an invisible illness or disability, even with those you are closest to. We explore how you can have frank discussions that help those around you understand your needs, whilst maintaining a sense of self that is not solely defined by your condition.

It is estimated by the World Health Organisation that over a billion people worldwide live with a disability. Around 75% do not use a mobility aid, such as a wheelchair, that may signal their condition to the outside world.

Understand the common misconceptions

a confused woman

It may be useful to understand the common misconceptions before sitting down to talk with loved ones or colleagues. This will allow you to be prepared for some of the questions that may come your way. Try to remember that if you’re faced with one of these misconceptions that the individual is most likely not trying to dismiss your needs but does not understand them fully. Give them a moment to express their thoughts, but be prepared to gently explain how your condition affects your day-to-day life in reality.

Some of the misconceptions you may face, and some thoughts on how to address these, are:

‘But you look so healthy’

It may be good to thank your friend for this thought, before explaining that whilst you may look healthy, it doesn’t always reflect how you feel on the inside. If you feel comfortable doing so, give them an example of a symptom you experience that cannot be seen.

‘I’d love to be able to spend as much time as you do relaxing!’

Explain that whilst being at home may have some advantages, it isn’t the dream that it can appear to be from an outside perspective. If you feel frustrated, disappointed or left out when you’re at home, let them know, especially if there is a way that they can then involve you more in the future such as having picnics at your house rather than heading out to local beauty spots.

‘But you seem so happy?’

A common misconception is that if a person suffering from a chronic illness is enjoying themselves, they must feel ok. You may want to explain that whilst you do experience happiness, laughter and moments of feeling carefree, especially when you are with others, there are also times that you do not feel well - these can often be at the same time as each other. Equally important is to explain that your condition can make you feel sad, depressed, anxious or isolated, if relevant.

‘But you still work and go out’

Lots of people believe that either you’re healthy and do ‘normal’ things, or you’re unwell and unable to do these activities. Explain that being unwell and being able to join in, especially when it comes to earning a living, are not mutually exclusive. If you feel comfortable doing so, explain how you’ve become able to manage symptoms and live with them on a day-to-day basis in a way that allows you to live your life.

Unfortunately, you may face many other misconceptions. If you feel like someone close to you is not listening or understanding your explanation of why their belief is not correct, it can be helpful to ask them questions about the misconception. For example, you could ask:

  • What makes you think that?
  • Can you give me an example of that?
  • Do you think you’d feel like that, if you lived with these symptoms?
  • Do you think that if {I seem happy when you see me} then I can’t also {sometimes feel frustrated about what I can’t do}?

Asking these questions can help the person to view the situation from your point of view, whilst helping them to remain open minded as changing their view appears to be their own idea.

Think about what you want the person to know

two men having a discussion

What you tell someone about your medical conditions is completely up to you. It can be really helpful to think about what you are and aren’t happy to share before starting a conversation. This way, you will feel in control of the conversation and ensure that it is beneficial to you.

Some areas to consider include:

  • What your conditions is
  • The history of your conditions, for example, were you born with an invisible disability, developed it later in life or was it the result of another illness or accident?
  • What symptoms you experience and how they affect you. This can be very personal and it is completely within your rights to politely say ‘I’d rather not go into all the details’ if you don’t want to share your symptoms at this time.
  • What help or support you might appreciate from your friend or colleague (we discuss this in more details below!)
  • Whether you’re happy for them to share what you’ve spoken about or keep it private. Whatever you decide here, it can be really beneficial to tell them explicitly what you expect so that neither party makes any assumptions that could hurt feelings.

It’s likely that what you want the person to understand will change each time you have this conversation with someone new, but these conversations will get easier as time goes on. Remember that this is about you, so if you feel uncomfortable at any time, let them know that you’re finding the conversation harder than you expected and you’d like to stop for now - you can always pick it up again at a later date when you’re ready.

Help others to help you

two friends embracing

What may be considered helpful will be completely unique, depending on your invisible condition, your symptoms and triggers, your lifestyle, support network and preferences. It will also be unique based on your connection with the person you are speaking to.

If you’re not sure what could be helpful, have a little think before starting the conversation. It can be really helpful to look online at any support groups or forums for your condition or others similar to yours, to see what other people have included in such discussions. You can also talk to those closest to you - best friends, family members or even any medical specialists. Each of these people may be doing little bits and pieces that they know make your life easier without you even noticing. They may also be able to explain what you struggle with most from their point of view, which can help you to ask others for assistance.

Often it is a small gestures that can help in everyday life, so don’t be afraid to ask those around you to:

  • Arrange get-togethers at places you can easily access and easily get home from, to make a quick exit if symptoms start to appear
  • Be understanding if you have to cancel plans at the last minute. Encourage them to keep inviting you and let them know you appreciate every offer you receive, even if you can’t always attend.
  • Store items you use regularly, such as supplies within the office kitchen, in cupboards you can reach without having to stretch or travel backwards and forwards.
  • Pop to the shops for you, if you’re not able to get out of the house. Eating healthily can be the difference between a short spell of symptom flare-ups and a really long one. If you can avoid takeaways and fast food by friends dropping food parcels at your door, then do take advantage of this!
  • Give you a lift, if you’re struggling with driving or getting to public transport links.
  • If you prefer, simply ask them not to treat you differently. Everyone views their own condition on their terms and you may prefer to not be singled out in any way, however well intentioned.

Remember that ‘help’ can also be more passive actions, such as giving you space when you need it. It may be helpful to agree with friends that when you are not feeling up to long conversations, visits or being fussed over, that you will drop them a text to let them know you’re ok but wanting to be alone for a while, and that you will check back in with them when you’re ready.

Whatever you need to support your invisible illness whilst living your life to the full, don’t be afraid to speak out. Remember, those who love you will always look to understand and support you where they can.

If your loved one is worried that they won’t remember all the information about your condition, and you may have an emergency whilst you are with them socialising, let them know not to panic. Explain that your MedicAlert ID jewellery and membership is there to keep you safe, wherever you go.

Remember that you’re the same person

a group of friends laughing

It is likely that you will overestimate how much of an effect the conversation has had on how your friend views and considers you. Please don’t feel anxious about no longer being just ‘you’ and now being ‘the person with the condition’.

If you do feel this way, you can always finish the conversation with ‘remember, I’m still just me - I haven’t changed just because we’ve chatted about this, it’s just that now you may understand a little bit more if I don’t always manage to meet up with you when I want to’.

It is likely that you’ll be really pleasantly surprised - these conversations can actually help you feel more involved in your friendship and relationships. By increasing your friends' understanding of you, your bond may deepen and intensify as they look to support you whilst appreciating you for who you really are.

MedicAlert is a community of members, all of whom are living with a wide range of health-related issues, including epilepsy. We are here to support all of our members through providing 24/7 emergency access to their medical records in emergencies, ensuring the most efficient, reliable and accessible route for medical professionals in times of need.

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