One of the hardest things about this illness is trying to explain it to other people, whether that is a partner, a friend or a colleague. It is something I have often struggled with, but after 19 years of ME/CFS I have developed some tried and tested strategies.

In this article I am going to share with you exactly what to say, different ways to communicate it and how to handle the different responses you will receive from other people.

From a quick summary to a fuller explanation, there are different ways to describe your illness. This is what I say, and why it works.

It can be tempting to try and convey everything about your illness – the symptoms, the lack of medical support, the impact on your career, family and social life. However this can be overwhelming for the person you are speaking to.

I find it is better to summarise things into one or two sentences, such as:

I have ME/CFS so my body is not good at producing energy. I would love to socialise with you but can only manage to chat for an hour before my tiredness kicks in.

This gives the person an overview and general understanding of your situation which is often enough, particularly if you don’t know the person very well. Depending on how they respond you can make a judgement on whether or not you wish to share more information with them.

People in the ME/CFS community are divided about how they prefer to refer to their illness. Some feel ME carries more stigma. Others feel CFS or chronic fatigue syndrome doesn’t convey the debilitating nature of their condition. Other people hate using either term and prefer to be keep things vague.

In support groups, when discussing how to describe our illness, I have seen people choose to avoid using ME/CFS and opting for terms like neurological illness, neuro-immune illness or mitochondrial dysfunction. Ultimately it is your illness so it is your choice how you describe it and what you want to call it.

You could say you feel tired, have achy legs or forget words but the person will equate these to a healthy person feeling tired and achy, which we all know is nothing like how someone with ME/CFS feels.

Instead compare how you feel to something people know makes you feel horrendous. Common ones are running a marathon, having a hangover, jet lag or really bad flu – or even all four of these at the same time.

When you tell someone you become tired easily and have to rest explain what this looks like for you. For example:

If I watch TV for 20 minutes I then need to rest in silence, with my eye mask on for 40 minutes.

Explaining the importance of pacing and the concept of delayed fatigue can help people understand why your energy and activity levels fluctuate. If they realise pushing and crashing makes your health worse they will hopefully be more understanding.

Here are two examples of what you could say:

People with ME/CFS have a limited amount of energy, like an energy bank account. I only have a certain amount of money or energy to spend each day. If I spend more energy than I have in my bank account I crash and don’t have the energy to do basic tasks like make dinner. When this happens it will take several days for me to rebuild my energy. During this time I have to minimise my activity so I can save up energy in my bank account again

I have a tendency to do too much when I am feeling good. This causes a crash and all my symptoms become worse. Health professionals have advised me to pace my activity, to stop over exerting myself so that I don’t crash. Crashing regularly will cause my health to deteriorate. Staying within my energy limits will help keep my health stable. This is why I sometimes have to say no to things I really want to do.

One of the reasons I hated explaining my illness to people was because I felt I couldn’t give them a legitimate reason as to why I had such limited energy. The good news is that there are now scientific studies which show significant physical differences between healthy people and those with ME/CFS. These include having reduced blood volume and reduced cardiac output, as well as having a 20 fold increase in lactic acid production when we exercise.

The World Health Organisation also classifies ME/CFS as a neurological illness.

Unfortunately there will always be people who doubt ME/CFS is a real illness, but sharing these scientific studies will make it harder for people to tell you “it’s all in your head”.

Now you know what to say let’s consider ways to effectively communicate it.

In the early years of my illness I felt a lot of embarrassment and shame about my health issues. Consequently, I was very awkward when explaining my illness to people. They would pick up on this awkwardness and become awkward themselves, and the whole situation was just very, very awkward.

When I gained confidence, and spoke in a simple, matter of fact way people seemed more comfortable and it was easier to engage them in dialogue. I would state the facts, in a “this is how it is” way without being emotional or shy about my limitations. This made other people more comfortable to ask me questions.

If you struggle with confidence, try one of these methods.

This avoids the face to face awkwardness. It gives you time to compose exactly what you want to say and also gives the other person time to digest what you have said. You could also include a link to any resources you want to share.

Save a copy of the message so you can reuse it in the future with other people.

• Unrest is a documentary made by ME/CFS patient Jennifer Brea. She has also done a Ted Talk
• CDC share some patient stories which give an insight into the challenges of living with ME/CFS
• NHS give an overview of ME/CFS including symptoms, diagnosis, treatment and management strategies
• My blog, Living with ME has a section with articles designed to help explain ME/CFS to friends and family

Asking a friend or family member to explain your illness to all your other friends or family can make life easier.

I used this strategy a lot at the start of my illness. I wanted people to know about my health problems, particularly those I socialised with, but didn’t want to explain it myself – partly because I felt uncomfortable talking about my health issues and partly because I didn’t want to use up my limited energy on the discussion, I would prefer to chat about something fun and light hearted.

Speaking with someone on a one to one basis creates more intimacy than a large group setting. I found these chats are a good option if you want to have a more in depth discussion about your health. Perhaps with the one friend who you are going to ask to pass on the information to your whole friendship group.

One to ones are also great when getting to know new people.  I have been surprised to find when I open up about my health issues how many people then confide in me about their own health struggles. This is something they would be less likely to do in a group setting.

There are a few different scenarios which you are likely to encounter when explaining your illness to someone. Let’s take a look at each one and see how you can respond.

Often people will compare what you are going through to something they have experienced. For example, they might tell you about a time they had really bad flu or a time they broke their leg and were housebound for a few weeks.

Some people with ME/CFS find this insulting, they feel the person is trivialising their illness, ME/CFS is so much worse than breaking your leg. However, I see it as this person trying to empathise. They are trying to find a way to relate to what you are going through. Even if you know the comparison they are making isn’t a fair comparison, meet this person with appreciation. They are trying to be supportive.

On the other hand, if they are using the comparison to say you should be doing more, then I would have a very different attitude towards them.

For example, if they said, “When I had flu I went to work even though I felt ill. You should try pushing through instead of lying about all day.” This person clearly doesn’t understand and will fall into one of two categories outlined below.

Inevitably you will meet someone who doesn’t understand ME/CFS and makes negative or hurtful comments. I find these people fall into two categories.

Category 1 – the person doesn’t understand because they are not educated about ME/CFS. If you mention some of the scientific studies they shift their viewpoint because you are showing proof you have very real, physical things wrong with your body. They are not likely to become hugely empathetic but I find the science is enough to stop their disbelief and negativity.

Category 2 – the person isn’t educated about ME/CFS and has no interest in learning or changing their beliefs. These people have to go! No matter how much you try and explain your illness to them they will not listen. You are wasting your energy. Continuing to have them in your life will drag you down. If you are unable to cut them out completely, distance yourself from them as much as you can and avoid talking about your health in their presence.

Some people may suggest you increase your activity level or exercise to improve your energy. To them this is a logical suggestion because it is how rehab and fitness works – you do more, then you get better. As we know ME/CFS doesn’t follow logic.

Explaining that when you push yourself beyond your limits it makes you worse not better can be a tricky concept for people to wrap their head around. If they have trouble accepting it try sharing one of these facts with them.

NICE guidelines and CDC guidelines state that exercise is not a cure for ME/CFS. They advise patients should not follow a graded exercise regimen because it can worsen their condition.

This study used a two day CPET (Cardiopulmonary Exercise Test) to measure how well the heart, lungs and muscles worked during exercise in people with ME/CFS compared to healthy but sedentary individuals. The test involved participants pushing themselves to limit of what they can do while cycling on an exercise bike. Doing the test over two consecutive days meant that the participants would undertake the second test while experiencing PEM (a crash) from the over exertion on day one. In the ME/CFS group the results on day two showed a dramatic reduction in their physical capacity proving the presence of post exertional malaise (PEM). Health Rising have written an in depth explanation of this study.

If you are lucky your friend or family member will ask you this question directly. If not try to bring the conversation round to the topic of what helps you. This is a great opportunity to explain a bit more about what you struggle with, strategies that help you manage your illness and how this person could be involved.

• How you struggle with physical tasks like cleaning, laundry, preparing food. Could they help you with any of these?
• How you feel isolated. Could they connect with you more regularly?
• How you struggle with phone calls. Could they send you texts or voice notes instead?

• Keeping to a set routine. Could they schedule visits with your rather than drop in unexpectedly?
• Not over exerting yourself. After 30 minutes of conversation could they ask if you need a rest?

• Being pressured to do more
• Unsolicited medical advice
• Busy, noisy environments

If you find it difficult to ask for help, I have written an article which explains 9 ways to help someone with ME/CFS. You could give a copy to your friend or family member and use it as a starting point for a discussion on how they could help you.

Pick one or two of the approaches, such as the energy bank account comparison, a saved message you can reuse, or explaining the science, and try them out. Over time you will find the approaches that work best for you and explaining your illness will start to feel less daunting.

• 9 ways to help someone with ME/CFS
• 5 strategies for processing chronic illness grief