does ME define me …

The fragmented.ME blog tag line is:

I am not defined by ME …

You will see it on the top every single page of my blog, just underneath the fragmented.ME … title. And, I can honestly say that when I wrote it I truly believed that ME did not define me.

I am not defined by ME …

But, a few years on and I am beginning to seriously question this tag line and the ideology that surrounds it, which I clearly agreed with or bought into at some point.

That said, I now find myself questioning if it falls into the category of toxic positivity, one of my pet hates.

Dr. Jaime Zuckerman, defines toxic positivity as:

the assumption, either by one’s self or others, that despite a person’s emotional pain or difficult situation, they should only have a positive mindset or — my pet peeve term — ‘positive vibes’.

 ME does not define me …

ME does define me …

Let Me Elaborate …

When your illness is not stable and every day you feel worse than the day before. Then, your illness can, and sometimes often does, begin to define you, and vice versa. Your thoughts can begin to be dominated and taken over by your illness. And the longer that state lasts the more you can feel defined by your illness.

It’s a vicious circle. You are in a catch 22 situation.

Let me repeat … It’s a vicious circle. You are in a catch 22 situation.

Catch 22:
a situation presenting two equally undesirable alternatives

you are desperately ill > you rest (because that’s all you can do being so unwell) > you are bored and so you think > you think about the illness and try to work out the whys’

you are desperately ill > you do (by triggering adrenaline because that’s the only way you can do things) > you notice you get sicker by doing > and so think and you try to work out the whys’

either way : you cannot win > using one option you might die on a mind level and using the other option you might die on a body level and using both options you are still being defined by the illness …

G R I M  . . .  But, when you are that sick, living the catch 22, surely it must means your illness is defining you.

A Part of ME or The Sum of me … 

I’ve read online that some ‘sick’ people, and so called experts, claim that illness does not define you, that it cannot define you. They say, it may be a part of you but it is not the sum of you. Adding that, you are much more than your illness and that you are you, and you matter.

a part of ME …

 or the sum of me …

These people, and so called experts, clearly do not know anything, or know very little, about a chronic illness like ME. As an illness, it can be all encompassing, affecting every single cell in your body. You feel as though you might die any minute. The illness, although long term, is not chronic in the sense that we generally understand chronic illness to be.

Having this illness is like a living death. As many ME experts have explained, with ME the patient feels as poorly as those who are in their last weeks of cancer or AIDS, who are actually dying. But with ME you are as sick as these dying cancer and AIDS patients, you just don’t die.

As a result of this, it can be extremely hard, almost impossible, to hold on to ‘you’ when all you can do is lie there and be seriously unwell day after day, month after month, year after year.

In fact all you can do is …

b r e a t h e   . . .

and

t h i n k   . . .

thinking …

Moreover, because of the restrictions and limitations the illness places on you, you find yourself having to let go of defining aspects of yourself, since you can no longer do them. When you do this, what you are actually doing is letting go of the ‘you’ that they are claiming you can hang on to.

In reality, what happens is that your thoughts gradually become less about ‘you’ and more about the ‘illness’.

until there is nothing left but the illness …

How Can This Happen …

You may be asking, how can this happen when the spirit to be ‘you’ is very strong and you feel doggedly determined to be everything you are capable of being?

you live inside yourself, inside your head …

As previously mentioned, towards the end in the above section. It’s gradual. It’s insipid. It creeps up on you. But goes something like this:

Well meaning friends and family will ask how you are, every single day, helping to remind you of your sickness. Anyone you see, outside your home, will be because of the illness. You will decline invitations, because of the illness. You will push to get stuff done. You will rest to get over doing stuff. You will search online and read copious research, reports, and books, about the illness. You will try every new fad that’s going about. You will try just about anything and everything. All because of the illness and in an endeavour to fix, or just work with, the illness.

In fact, all you ever seem to think, read, do, not do, and talk about, all comes back to the illness.

you are being consumed by the illness …

Detrimentally, and usually before succumbing fully, you will resort to employing your willpower to help you B E A T  this thing. You will desperately and repeatedly tell yourself that you can beat this, you can and will recover. There must be a way.

While at the same time, along with all this determination, you may well be plagued with conflicting doubts, asking yourself, am I causing this, am I making myself worse, am I letting it win, am I actually becoming my illness?

Anyhow, there’s a good chance it’s at this stage that you will finally be brought to the point where you have to seriously consider that question and its answer, which is very likely going to be YES!

am I defined by ME …
[you can exchange ME for your  own particular condition]

I Am (now) Defined by ME …

You are now at the final stage of where you find yourself becoming defined by your illness. I mean, what else is left? Yes, the core of who you once were, or believe you once were, might be flickering somewhere in the background. You might dream, or make plans, about the things this former ‘you’ could do. But you never do them. They are dreams and unfulfilled plans. Seriously, that person who you identified as is gone. They no longer exist. They have faded and been swallowed up amid the never ending symptoms and days and nights of nothingness. Lost in the, I can’ts’, cancelled dates, and the ever mounting unfulfilled plans …

of course …

I am [now] defined by ME …

Living Inside Yourself …

It is at this point that you start to fully live inside yourself. By this, I mean that you start to live inwardly, inside your head. And if you live inside yourself, which is, because of the illness, simply ‘sickness’, then of course you’ll ultimately become it.

There will be a never ending internal dialogue going on. Something akin to this:

Am I really sick?

Maybe I’m just lazy?

Is it all just in my head?

Why are all my tests relatively normal, yet I feel so shit?

Should I push [now / today / tomorrow]?

Should I stop [now / today / tomorrow]?

Can I be honest about how sick I feel?

Blah blah blah blah f**king blah

A M   I   E N O U G H ?

E N O U G H   I S   E N O U G H !

And there will be nothing happening externally to combat the reality you are now living. All you will have are your thoughts. Because, as sad as it is, all you have left is inside you.

What Now …

You have to learn to just be with yourself and your symptoms …

Soul Growth …

You cannot go on thinking all the time and living inside your head, it will send you crazy.

Eventually, it has to stop.

You have to stop.

You have to find the quiet amid the noise.

You simply have to learn to ‘be’ and ‘accept’.

it is what it is …

Yes, you have to learn to simply be and accept the fact that, it is what it is.

being …

When you can ‘be’ with your illness and all its symptoms, then a kind of peace ensues. A peace that overshadows the busyness of the thinking and the planning.

A peace that leads to acceptance on a very personal level. An acceptance of how sick you are and that you might no longer be who you were, or thought you were.

You no longer need to join in and live your life the way you used to do. Or the way you think others expect.

It can overshadow the not enough turning it into you are enough.

b e . . .

i n . . .

s t i l l n e s s . . .

accepting …

Accepting, it is what it is, is key to moving forward in this regard of being. If you can accept then you can be. I have written about acceptance in my blog ‘how to accept the unacceptable …’, which documents some of the techniques I use when I’m struggling with acceptance. These techniques have helped me to get to this point where I can, for the most part, accept that I am no longer the person I was and also accept that for now for this is perfectly OK and it is understandable too that I will at times feel disgruntled by it all. I can mostly accept it all, whatever it throws at me.

a c c e p t . . .

i n . . .

k i n d n e s s . . .

Full Circle …

We can call this, being defined by ME, if you will, I often do and right now I definitely feel defined by it …

That said, I am still going to leave my tag line as it is just in case I begin to get more time for the inner ‘me’ and less time spent on ‘ME’ … and I no longer feel as defined by ME as I do right now.

At the same time, I also like to think of it as simply,

a c c e p t i n g   t h e   u n a c c e p t a b l e   . . .

In Summary & In Conclusion …

The idea of ‘being defined by your illness’ is very personal and for some, even if they have severe ME, it may not mean they can accept, or even feel, they are defined by it.

Whereas, in my case, when I feel consumed by my symptoms then I will undoubtedly feel and be defined by them too. Likewise, I cannot be extremely sick every single day and not be consumed by what is happening to me. They are somehow intrinsically linked.

Thus, sometimes,

I am defined by ME …

Then, other times,

I am not defined by ME …

All things considered, if you are the same, then ways of being with the illness will be needed in order for you to simply ‘be’ with things as they are, especially when the going gets tough.

I personally need something that will allow me to have peace and acceptance, so that I am not taken over by all the thinking that happens when I am unable to do stuff.

In my experience, I have found that things happen by way of circular type of sequences. Whereby, I ignore the illness, carrying on as though I can do, followed by being more extra ill, then recovering somewhat, only to resort to doing it all over again, until I can no longer carry on that way. Leading me to the way that I need to be in order to accept things as they are.

Consequently, when faced with severe sickness you will go through some of the stages discussed above, and many others too, to get you to this point of peaceful acceptance. I do not believe that attitudes such as peace and acceptance are naturally within us all, yet when faced with serious illness we all seem to intuitively find our way there. As if it’s a necessary part of the journey.

Nevertheless, I do believe you will ultimately arrive at your destination ready to accept whatever you found through your journey. This is more than likely going to include some thoughts and feeling about whether you feel it is ok for you to be defined by your illness.

I will boldly say here that, it is ok to accept whatever you find.
It truly is what it is. 
It’s ok, if the illness has taken over everything and feel defined by it.
And it’s okay if it hasn’t, and you feel that it is only a part of you. 
Either way, you matter …

it is all okay …

it is what it is …

If the article has helped you in any way or you have anything you’d like to add, please feel free to contact me to share your thoughts or any questions you may have.

A Personal Concluding Note …

This piece has been incredibly difficult for me to write. I struggled to make it make sense and I think that’s because even now it doesn’t really make sense to me; to be defined by your illness and to accept it as such is incredibly emotive and feels contradictory. Yet, it is equally as necessary to end the struggle and to gain peace of mind. And I think I am still grappling with this idea …

 fragmented.ME xXx