There are a variety of unhelpful things people can say when you have Long Covid or another energy limiting illness (Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, cancer, neurological inflammatory illnesses such as Multiple Sclerosis, Transverse Myelitis and others).

And it’s hard to be on the receiving end of that when you’re unwell. I share them here so you know you’re not alone in experiencing them and that they do not apply to you and you get some ideas on how to deal with them.

These things people can say are stigmas which reflect people’s beliefs and assumptions around health, illness and recovery. They are not a correct reflection of all circumstances related to health, illness and recovery hence why they’re called stigmas. The unfortunate thing is they can be a widely held view in society. Which doesn’t make it easy for you.

This picture demonstrates the unhelpful things people can say when you have an illness like Long Covid or another energy limiting illness. A woman is standing there looking unhappy and a bit tired and saying, "I feel tired all the time." There are three other people (no gender) standing opposite the woman. One is saying, 'You're not doing enough to recover. The second person is scowling. The third person is saying, "You're tired? We're all tired!"

Unhelpful things people can say when you have Long Covid or another energy limiting illness

These are the most common ones I’ve come across in my work as a coach supporting people who are dealing with energy limiting illnesses, in research and leading a charity. You may have some of your own to add to this list.

There are a variety of unhelpful things people say when you have #LongCovid or another energy limiting #illness. Read here what they are and how you can respond #fatigue Share on X

You’re not doing enough to recover

This statement assumes you control the recovery process.

You do have some control, which I wrote about here, but not 100%. Also, with Long Covid, you can experience fatigue quite badly which can restrict what you can physically and mentally do. I’ll speak more on fatigue below.

The other assumption is: Recovery means you go back to the way you were pre-illness or injury.

This is a very common assumption in our society. It does happen with many illness and injuries like the common cold, flu, a broken arm or leg. So you naturally hold the expectation that you will and should go back to the way you were. But when that doesn’t happen, that’s when the challenges and difficulties can start.

The stigma reads: You must not be a hard-working person. You don’t care about your health.

You’re not really ill

People tend to say this when an illness and the symptoms you experience in relation to it are invisible. You can look perfectly fine on the outside.

The assumption is: You look well so you must be healthy and feel fine.

But you don’t.

The stigma reads: If it’s invisible, it’s not real and hence not valid.

And that’s not true. You can look well on the outside, feel downright awful on the inside and be ill.

People tend to say, “You’re not really ill” when an illness and the symptoms you experience in relation to it are invisible. You may look like there’s nothing wrong on the outside. But that’s not the case on the inside… Share on X

You’re tired? We’re all tired!

People can equate the experience of fatigue with regular tiredness. But fatigue is very different from tiredness. Here are a couple of examples.

You’ve just done a long haul flight and are badly jet lagged. You’ve also been looking after a crying baby for the last 72 hours so haven’t had much sleep and the baby doesn’t look like they’ll settle for tonight. And you’ve caught a nasty flu on the plane.

Your eyes feel really heavy and you feel tired. But you need groceries so you walk two blocks to the supermarket, spend 20 minutes getting your groceries, and walk the two blocks back to your flat. It’s noon. You have to sleep for the rest of the day and that night too to recover. But you wake up the next morning not feeling like you’ve slept. You only manage to shuffle around your flat to eat, use the loo, and lay on the sofa all day.

Some people’s fatigue can be so bad, they have to stay in bed most days. Others may have periods where they feel ok, can do more activity, and then the fatigue gets worse for a time. Often times you don’t know how you will feel day-to-day so it can make planning your life and what you want to do very hard.

Over-exerting yourself can also mean that you end up in bed for a period of time which is longer than you normally sleep. Your body will need this time to recuperate. But how much time your body will need may not always be predictable.

Fatigue is one of those things that you only really understand what it’s like when you have/ had it.

You’re sick again?!

People may say this when they see or hear of you doing more one day or for a period of time, but then you have to do less the next day or for many days due to an exacerbation of symptoms.

With Long Covid and other energy limiting illnesses you can experience a fluctuation in symptoms. Some days the symptoms are mild, or very mild so you feel almost normal, and other days they are very bad.

As mentioned above, there may not be a consistent pattern to this and you certainly cannot predict it. Particularly when you’re in the early phase of an illness; you don’t yet know what might trigger an exacerbation or easing of symptoms.

The assumption is: Recovery is a straightforward trajectory from being unwell to being well again. So there is no getting worse, then getting well, then getting worse again, then getting a bit better, etc.

But recovery from a challenging health issue, especially a new illness like COVID-19 which we don’t know tons about yet particularly regarding recovery, is not straightforward like that. It’s like the pictures here.

The stigma: It relates to the first and second ones above.

You’re not pulling your weight

This links to all of the above. People often say this when they are frustrated with the impact of your illness on them. Particularly if they’ve had to take on responsibilities you used to do whether they are work or home related and so they’re doing more. And of course when you’re not well, you do have to do less.

It’s not uncommon to feel guilty when someone says this. But you also know you did not ask for this illness and certainly did not want it. You just won the winning ticket in a health lottery you didn’t even know you were playing.

A picture of a woman holding the unlucky health lottery ticket. Around her feet is a grey cloud containing the words: emotional fallout, depression, anger, anxiety, wanting, wishing, uncertainty, hope, loss, isolation, grief. It's hard when one of the unhelpful things people say to you when you have Long Covid or another energy limiting illness that you're not pulling your weight. Because you didn't choose to have the illness and would prefer not to. You just won the winning ticket in a health lottery you didn’t even know you were playing.

When a person says this, in a sense they are saying, ‘I’m frustrated. I’m tired of feeling frustrated and doing the stuff you usually do. Please hold my frustration for me so I can have a break/ feel better/ don’t feel alone in this.’

But you don’t need to hold their frustration for them. And do what you can to put the guilt to one side.

So how you do you respond to unhelpful things people can say when you have Long Covid or another energy limiting illness?

Share information from expert reputable sources

This is information regarding your illness, recovery from it and prognosis, which backs up what you say. It can be from your GP, the NHS, known and reputable medical clinics, and charities. I find that people like to have a third-party reference point from an expert which validates what you say. This can help with the first four items above.

It’s a gentle way of expanding people’s knowledge so they learn how you’re really affected and hopefully, respond accordingly.

But what if they don’t? And they continue to share their frustration with you. There are a few things you can do.

Let them know the impact their words have on you

You can say, ‘When you say XYZ, I feel ABC.’ Make sure to use I statements rather than ‘You make me feel…’.

You can take it a step further if it’s appropriate in that moment and also name the emotional vibe you’re sensing from them. For example, ‘It seems you’re really frustrated. How are you feeling?’

And if you sense the person’s position softening, you can say how you would like them to share what’s going on for them when they next feel frustrated, etc. instead of saying things that are hurtful.

This leads to the next point.

Acknowledge the impact your illness has had on them and you

This is not meant to discount your experience. It’s also not a competition, i.e. they have it worse than you, or a one-upmanship. Not at all. This is about demonstrating empathy for them, their situation and your own. Sometimes this can influence people in such a way that they soften their approach.

Share your appreciation for what they’re doing for you

And I’m sure you’ve done that already.

Encourage them to get support and to take a break

It may require asking family members, friends, or colleagues to help out.

This picture demonstrates the ways you can respond to the unhelpful things people can say to you when you're living with an energy limiting illness. They are - Share info from expert and reputable sources. Let the person know the impact their words have on you. Acknowledge the impact your illness has had on them and you. Share your appreciation for what they are doing for you. Encourage them to get support and take a break. A woman is looking at these suggestions and saying, 'I can try these.'

And if none of that works? How do you deal with the continued unhelpful things people can say?

Some people don’t want to change for any number of reasons. This could be the case with the people who have said unhelpful things to you.

They may get a benefit from playing a martyr role. – “Look how much I have to do and sacrifice! I’m such a good person but it’s so hard!”

Some people think of accepting help as a sign of weakness, that they cannot cope. And this contradicts a self-image of being strong.

For some people, learning that the information they thought was correct is not, is an affront to their self-image of always being right. They can’t bear to be wrong.

Some people cling on to erroneous assumptions about health, illness and recovery because they haven’t known anything different in relation to their own health. So if they haven’t had that experience, it just doesn’t exist.

There could be an element of denial of your illness and its impact. The change is too much for them to bear and they may fear it. And/or they may not know how to cope with it.

You cannot control other people

You can only influence them by how you respond to them. And influencing isn’t a 100% guarantee of them changing. So am option you have is to let the energy around worrying what they say go. You need that energy for yourself and your recovery.

People often say that in times of serious illness or injury, they learn who their friends are

Who you can count on for support. This may be the time you review which relationships are worth nurturing and which ones are time to let go or take a step back from.

In this picture, there are three concentric circles. The outer circle is titled People I Once Knew. There are two people standing in it and one person is walking into it and saying, "My place is now here." The next inner circle is titled Acquaintances. The inner circle is titled Relationships To Nurture. There are two men and three women all holding hands. The point of we need to know which of our relationship to nurture. When you get a serious illness, you learn which people you can count on and which you cannot. So if you learn that there are people you thought were friends but really aren't, then they move into the Acquaintances or People I Once Knew circles.

What’s it like for you?

What are some of the unhelpful things people have said in the course of your or a loved one’s illness? Were any similar to what’s listed here? How do/would you respond to the unhelpful things people can say when you have Long Covid or another energy limiting illness? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).  

If you are living with a challenging health issue or are caring for someone who is, and would like support on any of the issues discussed here, have a look at how we can work together and get in touch for a free no obligation consultation.

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© Copyright Barbara Babcock 2020

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