What happens if someone close to you gets a diagnosis of Chronic Fatigue Syndrome (CFS)? Is it really nothing to worry about? Or will it have a big impact on your life as well?

I’m writing this blog post with the aim of helping friends, relatives, partners or carers. Yes, the person with the diagnosis needs care and support. But living with CFS from the perspective of a carer can be really difficult.

I also want to help anyone whose friend or work colleague is living with CFS. You may not be as intimately involved with that person’s life or care, but the way in which you react to them can be extremely helpful…or very detrimental!

And yes, I know, we all say and do things that come out wrong. We meant well, but either didn’t understand the situation, or just didn’t know how to deal with it. So, if you want to be supportive, but feel worried about “getting it wrong”, then I hope some of what I share in here will help you.

What does living with CFS feel like?

I want to start by inviting you to try and engage your empathy skills. Don’t worry, it’s not scary!

I’m going to try and describe some of how I felt during my twenty-year journey. Obviously twenty years is a long time, and encompassed a lot of different phases and feelings. Some things change over time, and some things don’t.

What it feels like to get a diagnosis

Confusion. Shock. Anger. Denial. Shame. Too ill to care!

Those are the five emotions and the one description that most readily spring to mind when I think back to the time when I was diagnosed.

I will elaborate some of these to try and give you more of a flavour in a moment.

What it feels like as the illness goes on…and on…and on…and on…

Still confusion, anger, denial and shame. Also hope, grief, optimism, despair, determination, fear, self-hatred.

The longer the illness lasts, the more the initial emotions change. Some become stuck. New emotions enter in response to hearing about possible relief for your predicament. And then of course we have the difficulty of confronting the disappointments and setbacks.

All of that is hard to experience, and hard to watch, or to be around if you are in an intimate relationship with someone.

So, let me unpack some of those emotions and try to give my perspective on where they came from. Hopefully that will help you, as the onlooker, to start understanding what your loved one is going through. That may already suggest ways in which you can be supportive.

After that, I will offer you a few suggestions of things that help and things that you really need to avoid doing.

Understanding these emotions and what you can do to help

So, let’s start by unpacking some of the bigger emotions. How do they change? Why are they there? Is there any way of alleviating them? How best to live with them?

Confusion about how I feel

Throughout the entire illness, confusion is a huge emotion. My body is experiencing all sorts of different things. Physical pain sometimes. Overwhelming tiredness, the like of which I had never come close to experiencing. I don’t really have words to explain the tiredness because it’s not like feeling tired at the end of the day, or feeling tired after doing a lot of exercise. This is something different and far more unpleasant…and it doesn’t go away.

Part of the confusion comes from not understanding why my body feels this way. Part of it comes from the fact that the level of pain, tiredness and discomfort changes. Not just day to day or week to week, but sometimes within a day.

Sometimes I could wake up feeling relatively good, get dressed, eat breakfast and then feel like collapsing. Other days I might wake up, feel unable to get out of bed, then by lunchtime feel like doing something.

And it feels like there is no predictor of this. I might go to bed one night feeling terrible, then wake feeling fine. Or, I might go to bed feeling OK and wake feeling terrible. I might do exactly the same activity on two days. One day I can accomplish it without a problem. Another day it feels impossible.

Confusion about what to do

So, all of that relates to the ongoing confusion. Immediately after diagnosis the confusion can be very specific. Sitting in a doctor’s office, feeling terrible, and being told nobody really understands what is happening to you is very confusing.

Being told that your doctor can’t offer you much – if anything – in the way of treatment is also confusing. We are all brought up to believe that doctors make us better. When they have nothing to offer, where do you go, what do you do?

And lastly, if you do walk out of the doctor’s office and decide to try doing your own research, you are going to meet with even more confusion. The number of opinions, suggestions and treatments on offer outside of conventional medicine can seem overwhelming. They are rarely, if ever, free. So, do they work? Is it worth spending money? And if so, who do you spend it with?

How can you help alleviate the confusion?

First, let’s talk about the confusion around how your loved one is feeling. This has a direct impact on you, as a carer/friend/supporter I know.

If the person you are caring for can’t plan their life, how can you plan yours?

The biggest “game-changer” I discovered for working with this set of problems was ACCEPTANCE.

Accept that nothing is certain. Sometimes it doesn’t matter. If your loved one has to live without a set routine each day, just allow that to happen. Don’t question it, don’t criticise it and don’t try to control it. Start encouraging them to trust their body and follow what it needs. (Understanding pacing can be really helpful here).

Sometimes, though, things are going to matter. If you always relied on your loved one to carry out a specific activity and they can’t guarantee to have the energy to do that, it is going to be a bigger problem.

So, in those types of situations, you need to get good at making plans B, C and D at the same time as you make plan A. That way, if something has to change at the last minute, you have a back-up in place.

And sometimes, it’s just necessary to accept that something cannot happen. If you have a 50/50 (or less) likelihood of being able to do that activity, it may be best to assume it won’t happen and put another plan in place instead.

Alongside acceptance, communication is also key. CFS has different stages and phases. So, at one time it may be that your loved one can’t do much at all, and you need those changes of plan. At another time, they may be able to do more.

Constant communication allows both of you to assess and work with whatever is happening.

Dealing with the confusion around treatments

One of the strangest, and most frustrating elements of living with CFS is the brain fog. That’s the inability to take in information, or make decisions, or think clearly.

So, when I was trying to investigate possible treatments, the brain fog just added another layer of confusion.

This is where a carer or friend can offer very practical support. They may be able to research and look for solutions.

BUT again, communication is key. You need to understand what your loved one is feeling and experiencing if you want to find solutions that are going to actually help.

Secondly, DO NOT try and force treatments upon them. Hard as it is to accept this, you cannot control the other person’s life, choices, or readiness to heal. I am about to talk about shame as an element of CFS. And if this is something your loved one is experiencing, then trying to force them to try any treatment is actually going to be counter-productive.

Also, make sure you really listen to them. I remember a well-meaning friend coming to visit one day, in huge excitement, “I was talking to a nurse in the pub last night and she told me there’s a cure for CFS and it’s xxx,” he announced, very pleased with himself.

I was furious.

Why on earth would I be furious about that? Because, less than a month before, we had had a conversation about exactly why that particular treatment was neither a “cure”, nor even particularly helpful. He just hadn’t listened, and now sat there trying to persuade me to do something that wasn’t going to help, and accusing me of not wanting to get better because I didn’t want to try it.

My advice to you: don’t do that!

Shame, guilt, depression and denial

Living with CFS can also bring a lot of shame and guilt and that can lead to depression. (To clarify, depression can also be a result of physical hormonal or microbiome issues, not simply a mental state that can be changed with some positive thinking).

You might be surprised to think of it being shameful to have an illness. And you would be right. There is nothing shameful in your body getting sick.

The problem comes from society’s attitude to this illness. Patients have been accused of laziness, hypochondria, neuroticism, and more.

None of that is true, but it has created an image of this as an illness that needs to be hidden.

And this can mean hiding from oneself as much as hiding from others. The thing that most of us, as patients, suffer with, is the pacing. The idea of respecting your body and following its demands.

We aren’t even honest with ourselves about how much we can realistically achieve. It feels shameful to admit that your body can’t do certain things. So, we deny the reality. Then we feel guilty and stupid for pushing through and ending up worse. And I’m sure you can see how that can spiral down into depression.

But not always. The funny thing about people with CFS is, they are often some of the most positive, driven, ambitious people on the planet.

How is best to deal with all of this?

Again, acceptance. Help your friend/relative/loved one stay realistic and positive.

If they can’t do something, don’t make a big deal of it. If they try something and collapse, just pick them and give them a hug. And, if you feel like they’re about to do something they can’t, find a way to make it OK for them to not do that thing today.

My most supportive friends have been the ones who continued to invite me to places, or come and visit me. If I could make the outing, great. But if I didn’t make it, they just invited me again next time or rescheduled the visit. If I needed to go home, they never questioned why or tried to convince me to stay. Acceptance without drama.

“Accept your friend or loved one exactly as they are.”

Katie Dean

Some practical tips for living with CFS as a carer or friend

I could write thousands more words on how this feels emotionally. But let’s leave some of that for other blog posts.

Instead, let me leave you with some practical tips you can use to help you feel more like you’re doing the “right” thing.

Three helpful things you can do

Accept your friend or loved one exactly as they are. If they say they can or can’t do something, just accept that.

Ask questions. I don’t mean question what they are doing. No, I mean be curious. Ask them how they feel and then really listen to their answer. Develop awareness about what they are experiencing. And if you’re not sure what to do, just ask, “what would feel helpful for you right now?”

Communicate. Illness doesn’t just change life for the person experiencing it, it also changes the balance within a relationship. As a result, life changes for the other people in that relationship. So, part of getting through that is about bringing things into balance again. And that requires good communication and adjustment on both sides.

It’s OK to feel resentful if extra burdens are falling on you. But it’s not OK to pass that on to the other person as blame. You may need to find your own support group so you can resolve the pressures that this situation puts on you.

Three things you should NEVER say to someone living with CFS

I’m about to give you the three worst things people have said to me through my years of living with CFS. I dare say these people all meant well, but these three reactions all made me want to carry out physical violence on the people saying them!

Number one: “oh, but you look so well.”

I understand that this can be meant as a compliment, as a way of saying, “well never mind, at least you look good.”

However, saying that to anyone who has just described feeling terrible is a complete invalidation of them. It carries an extra sting because of the stigma that I talked about in the section on shame, above.

Number two: “don’t worry, love, it could be worse – you might have…”

Again, this is an invalidation. Yes, I was always aware that things could be worse. I have also felt the blessings of having CFS. But if I have just shared my difficulties, it’s because I simply want a hug. I want to feel seen and heard, not told to pull myself together – however gently.

Number three: “I know just how you feel.”

No, unless you also have CFS, you probably don’t know how I feel. I appreciate the effort to be empathic or sympathetic. But this comment usually precedes a story about the other person. Again, if any of us shares how we are feeling, we do it because we want to feel heard.

What would be better to say?

And this is actually good life advice for listening to anyone sharing a struggling situation. They do it because they want to feel acknowledged. So, they aren’t expecting you to wave a magic wand and make everything better. They simply want to be seen and heard.

So, what is the best response?

Simply, “thank you for sharing that with me.”

Or even better, the best response I ever received was this, “thank you for telling me. I wouldn’t wish that on my worst enemy.” We then continued to chat about other things, in normal conversation.

What else can you do?

I hope that has started to give you a few tips and insights into how it feels to be living with CFS. Please also keep exploring the rest of the Find My Energy website in order to understand more about CFS. You will also find other posts with great tips for helping you to take care of yourself as well.

And if you want some support, you can always book a call with me. (Assuming I haven’t scared you off with my advice about what not to do!) Find out more at this link.

Alternatively, use the link below to join my mailing list and you’ll get blog posts delivered direct to your inbox.

Thank you for reading, and I wish you well. If you are caring for someone living with CFS, remember the importance of taking care of yourself as well!