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What You Should Know If You've Just Been Diagnosed With ME

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Today’s post is going up on the fifth year anniversary off when I first became ill, or, as I like to call it, “Sickmas.”

I’ve been kind of nervous about it, because I was worried that it would make me feel really sad – but then I got an email from a frightened mum, who explained to me about her sick daughter and that they had no idea what to do.

It made me want to talk to all those people who have either just been diagnosed, or think they have myalgic encephalopathy (ME), and don’t know what to do about it. I want to tell you what I wish someone had told me when I first got sick.

To be brutally honest, I don’t know whether I would’ve listened, because:

1. I was so sick to begin with, I wasn’t really capable of processing information fully.

2. I did not want to be sick. I didn’t believe I was seriously ill, both because I had no concept of what that really meant, and because I didn’t want to believe it.

If you’re reading this, I know it’s hard. I know you’re tired and the last thing you want to do is crawl through yet another article trying to work out what’s wrong with you, and what the hell you can do to make things better. Everyone promises so much, and delivers so little.

But please, read this, and, no matter how hard parts of it may be to take in, and no matter how much you might hate me for saying what I have to say, know that I’m doing this because I want you to get better. And I want you to never get as low as I did.

Our path is not an easy one, but it’s definitely not impossible to find your way.

1. Don’t panic.

It’s very scary when you suddenly find you’re not capable of things you used to be because of an illness.

It’s true that ME doesn’t currently have a cure, but it is manageable, and possible to improve over time.

Four of my relatives (by marriage, for those of your wondering about a genetic link) have ME, and they were all housebound at one time or another, and they all live pretty much normal lives now. They have to be careful not to overdo it, but they were all at a family wedding recently and were up and dancing with the best of them.

Think like Douglas Adams, and don’t panic.

However, this is serious. This is a serious condition. What’s more, it’s a condition that not much is known about, which means it’s not always taken as seriously as it should be by some medical professionals. (Fortunately things are improving slowly on that score.) It does mean, however, that you might have to take it a little more seriously than they do to compensate.

I’m not saying this to scare you, but because when I first got sick, I treated it like any other illness. I made light of it, carried on as normal and expected it to go away on its own. It did not do those things for me and, as much as I wish otherwise, chances are it won’t for you either.

I genuinely believe it’s possible to manage ME, but not if you continue to act like you don’t have ME.

Not everything is doom and gloom – quite the contrary. A positive outlook can be really useful, but you need to take it seriously as early as possible to help minimize it’s impact.

2. Rest.

Hands down, the best and most important thing that you can do is get proper rest. By proper rest I mean lying down, in a quiet room, with your eyes shut, and either concentrating on your breathing or listening to a meditation track. (You can also meditate on your own if you prefer.)

I use a “resting ratio” to determine how much rest I should have. At my worst, when I was nearly constantly bedbound, if I did anything, I then would rest twice that amount. If I did something for 20 minutes, I’d rest for 40. I’ve been slowly reducing that over the last two and half years, and it’s really, really helped me.

The minimum my National Health Service (NHS) ME specialist nurse suggested to me was resting 10 minutes out of every hour. It sucks, but you may need more.

When I first heard this I cried because it felt like so much had already been taken away from me, but it was worth it. Think long term improvements, not short-term goals.

You’ve basically got to channel your inner Victorian Lady and convalesce. Practice your swoon for maximum historical accuracy.

Remember, doing this from early on may help minimize the illnesses effects in the long run. Resting is basically your medicine.

Which means…

You’re going to have to change.

You might hate me for saying this, but the main (and probably most difficult) thing to accept is that if you want the situation to change, then you’re going to have to be willing to change how you currently live your life.

It may even need to be a permanent change to control the condition.

Some changes may be relatively minor, and some may be larger, but they will need to happen at some point.

I think on some level it’s difficult to believe that all these things apply to you, and you suddenly have to take all these things into account when you never did before.

It’ll take time for you to accept this, and find what needs altering. That’s fine.

It took me two years of pushing myself too hard in order to realize I had to change my outlook.

I will say, however, that I carried on believing I could act the same as I had, but just nap occasionally, and eventually it made me so ill, I became housebound.

Again, I’m not trying to scare you, I’ve definitely improved since then, and although I’m still housebound, I’ve got high hopes for the future…but I spent two years making mistakes. Please learn from mine so you don’t have to make so many of your own.

3. Get a diagnosis.

Once you’re sure you have ME, aim to be officially diagnosed. That is the first step you’ll need to take to get further support and potential financial help. It can take time, but it’ll make getting help a lot easier if you have an official diagnosis.

A diagnosis for ME is made by ruling out other conditions that could be causing your symptoms. It’s lengthy and frustrating, but on the plus side, it means you make sure it’s not anything else.

4. What the NHS offers.

NHS care and response differs from region to region, from surgery to surgery, and even doctor to doctor.

The NHS once recommended cognitive behavior therapy (CBT) for ME, it’s not actually particularly useful in terms of improving energy levels.

There is some contention between different scientists over whether ME is physical or psychological. Unfortunately, the official NHS guidelines currently lean towards the psychological (although we’re trying to get that changed). The newest studies from around the world show that ME is a biological problem.

Find a general practitioner who is aware that ME is a physical illness, and is willing to treat you as such. It’s really important for you to feel like you’re fully believed when you explain how you feel. Stick to your guns on this one, because it’ll make a massive difference to your experience with this illness.

Psychological tools can be very helpful in helping a someone who is chronically ill deal with being ill, though. As long as a counsellor doesn’t expect counseling to make your illness go away, they can be very useful. As I’m sure you’re aware, being ill is hard.

If your loved ones or carers are finding it difficult, then suggest they get support too. It’ll help them, and you’ll feel better, knowing they’re being looked after.

If the doctor or anyone else offers you something called “graded exercise therapy” (GET), I would be extremely wary.

GET is basically designed to build up muscle strength after a period of inactivity. It’s based on the idea that ME is psychological and that the reason the patient can’t do things anymore is because they’ve stopped trying due to “unhelpful illness beliefs.” (Let’s see them try that line with any other illness.)

It advises you to ignore any post-exertional malaise (a key symptom of ME, meaning you feel terrible after doing something), and keep pushing through to stick to the routine they lay out, regardless of how you feel.

For that reason, GET can be very dangerous for someone with ME.

There have been some who it’s worked for, but the vast majority either find it either does nothing or, more commonly, makes them significantly worse.

As someone who pushed herself to the point she became housebound, I wouldn’t do it.

(It’s also worth noting that as ME doesn’t have a clinical test yet, and it’s my opinion that it’s possible that the people who benefited from GET had a different type of illness with similar characteristics.)

Similarly the “lightning process” is another psychological tool, called neurolinguistic reprogramming, where the patient tries to persuade their brain into fixing their body. There are examples of it working for some, but again, it’s not something I’d recommend. Generally speaking, anything that seems simple or too good to be true likely is.

What might be more helpful is if your NHS link has any information on pacing – a method of restraining activity so you don’t go outside your limits.

What may be happening now is that you do something and then have an energy crash afterwards. That’s called peaking and troughing, and you want to avoid it if at all possible. If you learn to pace yourself, you can prevent big crashes. This allows you to let your body gain energy slowly and more stably, and then increase your activity over time to take your symptoms into account.

Doing this allows you to slowly regain your life without shocking your body. The baby steps really are baby, but it’s worth it in the long run.

Not everyone will understand

Because ME/CFS is so controversial, and gets such spotty media coverage, there are a lot of people who may not understand your illness.

There are several ways you can tackle this:

1. Don’t call it ME straight away.

Unfortunately ME has a bit of a stigma attached to it still, so for short meetings, like answering the door to the postman or the checkout lady, just say that you’re ill and your body can’t produce energy the way it should. It’s a short, succinct way of explaining the situation without having to go into a big, long spiel. (Thanks to Anna from ME, Myself and I for that tip!)

2. Find a metaphor that works for you.

There are loads of ways to explain ME – you can say you’re like a phone with a broken battery, a bike stuck in the wrong gear, that your body is stuck in hibernation mode. Find a metaphor that you feel comfortable with to explain in a bit more detail what happens to those a bit closer to you. This also works for other symptoms of ME.

3. The spoon theory.

For those moments when you need to get into even greater detail and explain pacing, use the “Spoon Theory” by Christine Miserandino.

It’s a really great way to ease people into the idea of energy management, and why it’s important that you do the energy saving things you do.

This theory is why you’ll often see the chronically ill refer to themselves as “Spoonies.”

4. Give people links.

Send your loved ones articles, websites or blogs that you feel best describe your condition. It’s possible that they’re doing their own research, which is great, but if something really strikes a chord with you, share it. It’s the best way to tell your friends and family how you feel without having to spend energy explaining.

Bonus points if they contain relevant memes.

5. Protect yo’self.

If someone is being hurtful or seems determined not to understand what you’re going through, then you have two options:

  1. If you feel able, you can talk to them, and explain that you’re upset because people don’t seem to understand your illness. Ask them if there’s anything they need clarifying. Some people tend to get twitchy and don’t know what to do around sick people, often because they don’t want to accept that something bad has happened to someone they love. I’ve got a couple of posts they might find helpful on “What Not to Say to Sick People,” and “Visiting Your Sick Person.
  2. If that’s too tiring or stressful for you, or it’s not changed anything, then attempt to quietly remove yourself from that person’s sphere wherever possible. I appreciate this is difficult, painful and not always possible, but if they can’t support you when you’re ill, then they’re not worth the heartache. You’re already dealing with a lot. Either they’ll sort themselves out and realize their behavior is unacceptable, or they’ll leave you alone and stop stressing you out so much. You’ll feel all the better for it. Self-preservation is not selfishness. You are sick, you have to put your health first.

Never feel ashamed of being ill.

The above tips are designed to protect you and make your life easier, and less tiring. They are not because there is anything wrong with being chronically ill. You have nothing to be ashamed of.

If you have enough energy to spend time explaining to people what’s wrong, and you feel comfortable doing so, then that is absolutely fine and you should do so.

Similarly, it’s not your fault.

Your illness is not your fault. We don’t know what causes ME, but a lot of people blame themselves for doing too much and “making themselves” ill or wondering what they could’ve done differently. That’s what I did for a very long time. It is also a load of absolute bollocks.

No one lives their life expecting to become ill or disabled. It is perfectly natural to live your life without a thought of potential serious illness looming over you. Frankly, living your life like that sounds really unhealthy.

There are plenty of people who lead extremely busy, chaotic lives, get a virus, and then are perfectly fine. No one bats an eyelid at them. We just won the sickness jackpot. Yay us.

Also, no one ever wants to become seriously ill or disabled. You didn’t somehow wish this on yourself, even if you made a joke about it in the past or wished you weren’t so busy.

So I will say it again, and keep saying it – it is not your fault that you are ill.

Grieving is important.

It is not fair that you’re ill. It’s not fair that other people are fine when you’re not and get to do things you can’t. And it is perfectly natural for you to be angry and upset about that.

Grieving is a natural part of any long-term condition, and no matter how long your illness lasts, it still sucks, and you’re still allowed to be sad about it sometimes.

Lots of people will tell you to be positive, and they’re not wrong per say, but there has to be a balance. Trying to be happy all the time when you’re not, especially to make other people happy, is not healthy, and requires far more energy than you likely have access to.

If you want to feel sad on your own, or with a select group of people, that’s fine, but don’t hold it in.

Similarly, if you feel sad constantly, or oddly numb, then contact your doctor about talking to someone.

This is where a mental health professional comes in really handy, because you get to vent at someone without worrying about how it’ll make them feel. I highly recommend it.

There is also nothing wrong with taking antidepressants if you feel you need them. I take them and lots of other spoonies of all varieties do too.

You will get it wrong.

The most helpful thing my ME specialist nurse ever said to me was this:

“You will get it wrong.”

It might not sound the most reassuring thing, but learning to live with this illness in general, and pacing specifically, is a massive learning curve.

It’s kind of terrifying to be constantly juggling everything trying to keep your health in check. Knowing that everyone gets it wrong, and that that getting it wrong is perfectly acceptable and normal is incredibly freeing, especially if you’re naturally a perfectionist.

You will mess up. And that’s OK.

You are not alone

It can feel like you’re alone with this disease, but you’re not. If you go on Twitter, Instagram, or Facebook there’s a massive community of people who are in the same boat.

We’re all rooting for you.

It might be useful to see if there’s an ME support group in your area. It’s really helpful to know other people who can give advice and are going through the same thing.

I found one online in my local area. Even though I’m not able to attend the meetings yet I stay in contact on Facebook, and it’s lovely knowing I have people who are close by that are just like me.

You can do this.

This illness is daunting, and it’s going to feel like you have to be your own doctor most of the time. You can do it. People are so resilient, and you’re capable of far more than you know.

Trust me, you’re much, much stronger than you think.

I’ll give you some links to some ME charities, and the private clinic I’m with, The Optimum Health Clinic.

The ME association have loads of information on their website about ME, and downloadable booklets on pretty much every aspect of the illness, and how that effects day to day life.

You can also ask specific questions through their Facebook page (either as yourself or anonymously) and they’ll open the question out to the group. That can be really helpful, and their medical advisor, Dr. Charles Shepherd, is awesome and also has ME, so he’s super knowledgable.

1. The ME Association

2. ME Association Facebook page

3. ME Action

4. Action for ME

5. ME Research UK

6. Invest in ME 

The Optimum Health Clinic is also technically a charity, but runs a private clinic specializing in ME, fibromyalgia and multiple sclerosis. It’s not cheap, but they are very supportive, and I’ve found them very helpful. The psychologists have all had ME, so they know what it’s like, and the nutritional side can really help support the immune system.

I really hope you find this helpful, and that it gives some idea of where to start.


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Originally published: December 1, 2017
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