fragmented.ME …
illness & health ...

ME an invisible illness …

I get really frustrated when people describe ME an an invisible illness. To me, calling ME invisible is potentially an offensive term to use. This is an illness that has had such profound effects on my life. I know it also affects millions of sufferers worldwide as well as those close to us too.

I’ve no idea who actually coined the term that any illness could be invisible, or where that specific description of determining ME as invisible came from. But, those that know me, or closely know anyone with any level of ME, can tell by simply looking at us that we are very sick, and even more so when we are extra unwell. This is all without even addressing the impact it has on what we can and cannot do.

It has just dawned on me that calling an illness invisible is about judgements. Judging someone and inadvertently implying that what they say they feel or experience isn’t real because they look fine. And so we, in order to try and not make judgements, we call it invisible. It gets us off the hook.

Oh I see now, it’s invisible so I don’t need to worry you may be lying about it, I can’t see anything, [even though I’d rather be able to see something in order to accept that you are genuinely ill], I can now ‘sort of’ accept you’re ill, it’s just invisible.

because we can’t visibly see anything outwardly.

FYI invisible is something that can’t be seen, felt or touched. Trust me. I feel it every single minute of the day.

This makes me really angry.

Because you can’t see it we have to call it an invisible illness so that others won’t judge us. What a load of old bo**ocks.

Based on my own experience, as well as researching invisible illness, a few recurring aspects stood out to me that I am going to cover below, addressing each aspect in relation to the different levels of ME.

definitions …

Let’s first take a look at how ‘invisible illness’ is defined:

invisible illness:
An invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders.

Wikipedia : invisible illness:
Invisible disabilities, also known as Hidden Disabilities or Non-visible Disabilities, are disabilities that are not immediately apparent, are typically chronic illnesses and conditions that significantly impair normal activities of daily living.

Given those descriptions then, I can begin to understand why maybe mild ME could be classed as invisible; because most of those symptoms mentioned are not always visible to the onlooker.

However, what about the actual sufferer. Are the symptoms invisible to them. Clearly not. Ask yourself, could you experience any symptom and claim it’s invisible. We are more than just what we see with our eyes.

We might also ask here if cancer is classed as an invisible illness. I do not know the answer but from my experience I would guess not. Yet, unless a cancer patient looses their hair due to treatment or are in their final stages of life, many cancer patients are living a life to the full and you would not know by looking at them that they have cancer. While in contrast, even those mildly affected with ME live a life that is a fraction of their previous ability and you can tell by the life they don’t get to live just how poorly these people actually are.

use your senses …

As noted above, we have five commonly accepted senses, not just our eyes. And so, our other senses will ensure that symptoms are visible, to those close to the sufferer at the very least. Yet, if an onlooker uses all their senses I am sure it will be easily clear for them to see any so called invisible illness. You just need to use your senses and to pay attention.

Furthermore, I can also assure that any level of ME beyond very mild, and definitely at the level of my own illness and symptoms, this illness is by no means invisible. Even those close, and not so close, to people classed as having mild ME will be able to see their loved one is very sick by comparison to their previous known health and activity state.

Taking this into account I’m wondering if we should ever be framing illnesses around others’ narratives and instead be using those of the sufferer, as they are actually the ones experiencing the illness.

recurring aspects …

When you have an illness that is classed as invisible you will keep meeting some recurring aspects or themes from other people. I have chosen just five of them to discuss further in the next sub sections.

#1 you don’t look sick …

If I had a penny, just one penny, for every time someone has said this to me I’d be mega rich.

y o u   d o n ’ t   l o o k   s i c k  …

What I’ve realised from being sick for so long is that there is a time in your life when youth covers over so much. So, if all people are looking at is how you look then they won’t see the illness. However, when you hit a certain age this no longer applies. For me it was when I became 48. It was around this time when I could look in the mirror and see my illness, written on my face, even when I didn’t have much active symptoms. And since becoming severe with ME I don’t think anything can cover over that. Not even youth can hide severe ME. Those with severe ME are often bedridden, wearing eye and ear coverings to block out sensations their poorly bodies cannot cope with. How can this ever be classed as unseen.

mild …

the mildly ill may not look as overtly sick, as often, especially if they have youth on their side, and makeup can disguise a lot too, but that does not mean they are not sick …

moderate …

at this stage you will definitely begin to look ill when you are actively ill and maybe even when you don’t feel so bad you might look unwell …

severe …

most severe are housebound and often bedbound, how can anyone claim this is invisible …

very severe …

most very severe ill patients spend 24/7 in bed and cannot hide the severity of the illness, they usually have their eyes and ears covered and block out as many sensations as possible …

#2 you need to …

For some reason, people feel invited to offer unsolicited advice to ME patients. Telling us quite freely that,

y o u   n e e d   t o  …

do ‘this or that’ and you will be cured. I’ve heard so many people claim they have the answer to ME and that if sufferers would only do ‘this or that’ they could get well if they really wanted to.

These kind of offerings will usually involve some new age wacko idea or some wonder food. Whatever, the helper suggests you need to do, the advice is unsolicited and without any thought for how they themselves might feel if they were seriously sick and someone trivialised their condition by suggesting that kale, of all fucking things, can cure you.

This is offensive, firstly because it implies that a sufferer hasn’t already tried everything known to mankind, which we will have. Secondly, by suggesting that the sufferer could and would do anything to get well, if they only wanted to.

Do yoga, do more, do less, take pain medications, don’t take so many pain medications … the ‘you need to …’ list is never ending.

mild …

actually yoga and meditation and pain medication, can all help us cope better with being ill, but it really can’t cure ME, just like it doesn’t cure cancer …

moderate …

for someone with moderate ME anything physical might be too much for them and so suggesting such may also cause them to feel negative about their illness and about you too, so if you value their friendship ‘you need to’ be quiet or be kind …

severe …

at the severe end you can’t even do yoga and trust me all you do is meditate, how do you think we get through such horrendous times …

very severe …

don’t ever expect anything from a severe ME patient, some of them can’t even communicate …

#3 you always cancel …

Please, don’t tell us we always cancel. This really makes us feel bad. We always, always, do everything in our power to not cancel unless absolutely necessary. Remember, we too are missing out.

y o u   a l w a y s   c a n c e l  …

It is so important that friends and family accept that any plans made with poorly ME people are tentative, only pencilled in. It is highly likely, that plans might be cancelled or rearranged. The sheer logistics of going somewhere when you have ME is too much for anyone.

mild …

being mild is a difficult place to be, you usually are still trying to pretend you’re normal, trying to ‘live’, so when a mild sufferer cancels it’s incredibly difficult for them to deal with …

moderate …

by the time you’re moderate, you’ve lost the friends and family who don’t understand how sick you are, so cancelling may be understood by those that have stuck around, but it’s even more difficult for the moderate sufferer to cope with because each cancellation means a bit more life lost to this awful illness …

severe …

those with severe ME may be able to have visitors but they still may have to cancel because the stimulation might be too much for them on the pre-planned day … be kind to these people …

very severe …

being in bed means you can’t go anywhere not even medical appointments … everything is too much …

#4 you should try …

This aspect can be closely tied to ‘you need to’ but its a tad more subtle, or more appropriately termed passive aggressive, in its approach.

y o u   s h o u l d   t r y  …

Instead of telling the receiver they NEED TO this implies they are only suggesting something might work. Still, it is usually offering unsolicited answers to unshared problems or unasked questions …

mild …

as above in the ‘you need to …’ section … and please don’t be so manipulative …

moderate …

as above  in the ‘you need to …’ section … and please don’t be so manipulative … 

severe …

as above  in the ‘you need to …’ section … and please don’t be so manipulative … 

very severe …

as above  in the ‘you need to …’ section … and please don’t be so manipulative … 

#5 you can’t possibly be …

Again, ‘you can’t possibly be’ comes unsolicited and claims the person with ME is exaggerating or making up their illness and symptoms. This is tantamount to calling us a liar or malingerer.

y o u   c a n ’ t   p o s s i b l y   b e  …

How can anyone claim that they know how someone else feels.

And why the f**k would anyone ever make up an illness that no one believes in … one that when you try to get financial assistance you are treated tantamount to a liar and malingerer.

No chance.

No likely.

If you were lying about being ill you’d be way more inventive and you’d pick something that at the very least people believed in and offered assistance, empathy and sympathy to those afflicted.

mild …

if when I was in the mild category of ME and people hadn’t questioned that I might be exaggerating the symptoms and their effects of my illness and they would have simply accepted my word, I can guarantee you that I would never have ended up severe … therefore, anyone who doubted me in anyway has helped me become housebound and bedridden …

moderate …

the same as mild but ten fold …

severe …

the same as mild but fifty fold …

very severe …

the same as mild but it’s way too late now … just be sorry you helped us get here and be extremely kind and gentle to us (that’s if you ever get to see us again) …

invisible!
not a bloody chance …

I think all of the above categorically shows that no illness can, or should, be termed as visible. It also shows how offensive it is to call any illness invisible, especially one like ME that impacts life so heavily.

On a final, and devastating note, just to add to the insult, research has shown that ME sufferers are up to six times more likely to die by suicide compared to the general population.

people  with ME are six times
more likely to commit suicide

in summary & in conclusion …

I think the symptoms of living with ME is enough to deal with. Yet, coupled with doubt, disbelief, unsolicited advice, and loss it is simply too much for us. Hence, the sixfold increase in suicide amongst those with ME.

Hopefully, these numbers will be be enough to move you to,

b e   k i n d  . . .

a personal concluding note …

Please, please, if you ever meet anyone who tells you they have ME, of any level, please be very gentle and kind to them …

Please feel free to contact me to share your outcomes or with any questions you may have.

 fragmented.ME xXx

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰