They won’t know

I wrote on Monday about how different ME, and many other chronic illnesses, look from the inside and outside. How those who don’t know what is going on simply can’t tell. So, I want to expand on this with just three reasons why raising awareness is so important.

Reason 1: Because if we don’t tell people, they won’t know.

I have noticed that we have a tendency to not want to believe the worst situation. We want to think that when someone tells us how bad their illness is, that they are over-emphasising it. Why? I suppose that it’s because if they are telling us truth then that situation is too awful to comprehend. I assume that it’s because if we knew how bad something really was, we would also know we would have no choice but to help. But perhaps that’s me not wanting to believe the worst.

It also seems that people want to believe that if someone suffers greatly they suffer because they have brought it on themselves. We may not explicitly believer in ‘karma’, but there is some comfort in the vague idea that if we are bad we get what is bad, and if we are good we get good. When we see something awful happen to someone good, we often rationalise tha they somehow deserved it, or their bad choices lead to it… because if it could happen to them, it could happen to anyone. If it could happen to anyone then it could happen to us.

As I have already mentioned, ME really does look invisible from the outside. When you’re too ill to go out, those outside can’t see the casue, just the result. So when people look on that, just the result, they maybe like to assume that the cause isn’t as bad as it really is. And as long as we let them keep that assumption, they don’t know any better.

If you add to this the tendency in most chronically ill people to hide how ill they really are, people often really cannot see or understand how much an illness effects someone. Actually, when we hide how it really is, we end up obscuring the truth of our situation and making it harder on ourselves.

We need to speak out and say this is how it effects us – the sufferers, the carers, the family & friends – this is how we suffer and survive. If we don’t tell them, they don’t know – but if we do tell them, if we don’t shut up about it, then they have heard the truth.


Observations on ME

Edit: Over 90 posts for the #May12BlogBomb, wow!

Observing ME from the inside and from the outside can tell very different stories. As a sufferer or carer you are acutely aware of every limitation, every pain. Many of us take great efforts to lie to ourselves about the true severity, but when it comes down to it you can’t avoid facing the limitations faced on your life. If you’re simply too ill to dress yourself, you can learn to appreciate the loungewear you’ve been in for the last week but you can’t convince yourself you were able to get dressed.

As a friend or acquaintance, you don’t see that side. On the torturous days when the sufferer wonders if they will even make it to the next morning, the outsider can only see their absense. There is no way to tell just from that the severity of the reason for it. On the days when the sufferer is as good as possible – perhaps they make it to work, or they are able to sit up and feed themselves, or able to tolerate a moments touch – the outsider can only see what they are managing in that moment. One who isn’t there all the time doesn’t see what’s going on all the time.

That’s why what’s portrayed in those surface glimpses gives such a wrong impression of what’s really going on. I only know that those around me who are suffering are truly in such bad states because I’ve been there myself. I may only speak to them rarely, and always when they are well enough for that, so I don’t see what they are really going through. I see just that but I can’t deny the reality of how awful their situation is – because I know what it’s truly like, I’ve been there. But for those on the outside, those without that intimate knowledge, what impression do they get? When you think of it like that, it’s easy to see how people jump to wrong conclusions.

They can’t know how much payback will occur from such ‘simple’ actions, how much careful planning has been expended for the possibility of flicking through a magazine. One who hasn’t seen it rarely dares to imagine the true state of a life with ME.

That’s why the job of telling people, of raising awareness is utterly vital – why those who are campaigning the best they can to let people know about this awful disease are doing such an important thing.

May 12 Blog Bomb

This post was written as part of the #May12BlogBomb for ME awareness. In tomorrow’s post I’ll start exploring some of the major reasons why those who are raising awareness are doing such a fantastic thing, but for now why don’t you join in: read about it here:, or write your own post with the hashtag #May12BlogBomb.

ME awareness week 2014

Wow, that time again!

This year I’ll be writing some thoughts for the #May12BlogBomb. You can get involved here: Make your own post and share it with the #May12BlogBomb hashtag.

If you live with ME, there’s also a #ThisIsME blogchain with a standard set of questions you can answer, started here: You can just make your own post and share it with the #ThisIsME hashtag.

No blog? You can have your post hosted here:

This year I highly recommend the blog of my friend Anna, who writes extensively about living with ME: Today she has been hosting a tea party to raise money for ME awareness – blue Sunday – a popular event which has spawned others to do the same and collect money for charity!

If you want to contribute with her to raising awareness, there are many great charities out there- I suggest checking out Tymes Trust (, Lets Do It for ME! ( and Invest in ME (

Adjusting to discipline

I started writing a while back about adjusting from chronic illness/disability to what is considered ‘normality’, since it’s not covered very often and a lot of people had questions about it. Like I explained in the first post, “I’ve not been writing because I’ve been doing, and for me writing requires a lot of space to think”, but that’s part of adjusting, too… working out what to make space for and how to do it.

I have a little space now so I’d like to continue where I left off, way back in March.

I found the struggle back then to be with discipline, and not having a schedule really didn’t help with that. I wasn’t using the time I had in a way I considered good, because I was no longer disciplined in making sure the housework was done, getting up at a reasonable hour (etc.) – and that last one is especially hard if I don’t have any specific reason to be up at a certain time! I spent far too many mornings just dozing, in a state of being too sleepy to get out of bed but not actually sleepy enough to sleep. Also, sleep was kinda my default state for almost 9 years. I remember hating sleep so much – I’d rather use time on something enjoyable or necessary than on dozing in bed, but it took work to break out of it.

I was working from home a lot too, both doing housework and lesson planning for tutoring, and they suffered from lack of discipline. I wanted to get them done in a certain amount of time but the push to actually do that was very difficult. I think discipline is a “use it or lose it” skill – I don’t blame myself for that loss, I had no choice, but I still find it a struggle to re-learn.

It’s amazing how quickly you lose it and how long the retraining takes.

There were a whole bunch of other things that I suddenly need to do, too. Eat healthily (since I can actually cook!), exercise, go to bed on time, do laundry. I had to remind myself to do things just because it had been so long since I was able to do them that I forgot that they needed to be done. Going to church on a Sunday felt utterly bizarre, and bathing? Oh yes, bathing. I used to shower every day before I relapsed, and then suddenly I could only bath every… month? Once a week at best, and that was pretty rare. And required supervision. Awkward.  Suddenly I didn’t have that restriction anymore, but I also didn’t have the habit! Don’t worry, I didn’t go for more than a few days without remembering – is it okay to admit that on the internet? – but I just would plain forget that it had to be done. Probably a good job that I like showers so much!

It basically felt like I was learning it all from scratch. But I also had a better foundation, the knowledge that I did actually need discipline (and a schedule), and that I could build my life on top of the things I knew to be important, instead of trying to cram them in at the edges.

Wisdom and words

I spoke on valuing both silence and speaking up, but truthfully, I feel lost in this area. I wish I had the wisdom to know when to speak and when to be silent. To be sure, sometimes it’s obvious – but I feel like those occasions are few and far between.

I’ve noticed some people tend towards keeping silent always. Keeping silent in the actual situation when they desire to speak, anyway, and then ranting about it privately. To be honest I probably tend towards this. Keeping silent when words need to be said can be so damaging, but I know so well how powerful words are, and how powerful still is the rejection of the things of our heart.

It’s true also though, that many tend towards always speaking up, always objecting. In some situations, to not speak up is to side with wrong, and so they decide to always speak up. But speaking up when silence is better is just as damaging – what you say hurts. Words drive bigger barriers than seas between people, and can do more harm than knives. Why do we sing the songs “sticks and stones…”? Not because words don’t hurt, no – but because we want our words of not caring to hurt the one who hurt us! Sticks and stones may break bones, but bones heal within a few weeks, and I’m still broken over words said to me years, decades ago.

There is a time to speak and a time to be silent, but I don’t trust that I can identify either particularly well. I need a lot more wisdom for that. But I also wanted to explain my thoughts about these things – about how both are so important – because it seemed rather incongruent for someone with a blog (of all things!) to claim they valued holding their peace!

Why I value speaking/shutting up

I ranted on it, so I thought I should be reasonable about it too: (not) shutting up.

I value shutting up. I also value speaking up. It sounds an odd pair to value, but then some people might venture to describe me as odd anyway. Regardless, I hold onto this as a wise saying:

“There is an occasion for everything,
and a time for every activity under heaven:
…a time to be silent and a time to speak” Ecclesiastes 3:1, 7

There are times when it is really important to not speak: The words which bubble up inside will do nothing but ill. The thoughts in your head are too whirling and disjointed to help. The things that come to mind are meaningless. There are times when, regardless of how good and true what you have to say is, the other person is not ready to hear it. The things you say will fall on deaf ears, and all that will happen is your pearls will get trampled in the mud. There are times too when there is nothing better than to listen. Your side, my side, it is valuable and important but right now, the absence of opinion speaks louder than the flurry. Sometimes it is better to say “I am listening”, when you want to say “I disagree”.

There are so many times where it is better to hold your peace.

There are times when it is really important to speak: The fear and worry that tells you to keep your peace is holding back words which will break down barriers and bring healing. The thoughts in your head are exactly what they need to hear. The things coming to mind are timely and Godly. There are times when, regardless of how difficult the circumstances, the other person needs to hear what you have to say – even if what you say falls on deaf ears. There are times too when to not speak up is as good as saying you’re on the side of the oppressor. There are times when you are unable to do anything, and nothing you say is listened to, but you have to say it because if you keep silent you’ll be as bad as them. There are even times when words have power and effect great and mighty change, and you never expected it.

There are so many times when it is wrong to hold your peace.

When I can’t shut up

I can really relate to the whole “no one can control the tongue” thing. I mean, I’m fairly good at holding my peace, of restraining myself when speaking will just make everything worse. Sometimes telling your side of the story just isn’t going to help anything. But sometimes, I can’t shut up.

Especially if I’m angry.

It’s worse because this week, I realise I’m staying with someone who just Does Not Understand what I am saying. I have been trying to get them to understand for most of my life, and I should know by now that it’s a lost cause, but something snaps and I cannot not say something. Even though it’s useless.

…but the government has destroyed the NHS. Do you not understand that? The NHS is GONE. I don’t care if your MP is “a nice bloke”, it’s his party’s policies that are directly responsible for this.

…but people are starving to death in the UK. Starving to death. In the UK.

…but we are supposed to “submit to one another in love”! Where is giving up the place of authority like Jesus did, and serving like Jesus did? What they propose leads to abuse and break up of relationships. It is embracing the curse that we are supposed to be breaking.

…but people are killing themselves because they can’t care for themselves. They are told they are lying and they don’t have enough money to eat or live, and they need care every day which they can’t get, so they kill themselves.

…but that’s not what the Bible says! That’s human rules made to look religious!

…but I don’t care if the BBC reported that, it is a lie. Go look at the figures for yourself. No, actually look for yourself, and work it out in your head. It-is-a-lie. Just because it’s in the paper, doesn’t mean it’s true.

It’s futile and foolish because it all falls on dead ears. Usually I know, I can tell it’s useless to say anything, because they are so set in their ways they won’t hear any of it. But for some reason, here today, I can’t shut up about these things that make me so angry. The things that are destroying our world.

Who wants to hear a clanging gong? It’s just off-putting. I want to live a life which shows what I believe, and have an answer ready – not just spout my mouth about stuff in a way which won’t make a difference. I want to bide my time and say it clearly when it will be listened to. I think today all my words are being wasted, but I’m angry about all these issues, really angry, and I can’t seem to shut up.