Compassion starts with the self. #1000Speak

(source)

This post is part of the #1000Speak. 1000 voices from around the world speaking up for compassion, 2oth February 2015. The world most definitely needs more compassion at the moment.
You can find all the posts here.

Self-compassion isn't an indulgence. It is a necessary part of life and without it we can't truly engage with the wider word in a compassionate manner. It's been a hard lesson to wrap my mind around and I am still working on it, but I'm getting there little by little each day. 


I am always amazed by is how a single negative comment can outweigh a dozen positive. Doesn't matter if it's about me personally, the blog, my shoes, how I do my hair, cook a a meal or even my taste in TV shows. If I'm not careful, every single good comment can be swept away with one little ,"you suck". Doesn't even matter who it comes from. Stranger, friend, family, that negative is like a tsunami sweeping away all before it. For some inexplicable reason many of us tend to hold onto those negatives. We imbue them with a power that is hard to dislodge. And ruminate upon them until we adopt them as our own. Self-flagellation at it's finest. All because that one comment tapped into an emotional raw spot in our psyche. 

I still recall every nasty nickname or put down, from primary and high school. I remember every time I was told I was not good enough. Not pretty enough. Not smart enough. Not something enough. Most of the time I can put it in it's place, but every now and then a crack opens up in my defences and someone will make a comment and all those old feelings will flare up as raw as they were back the day when they were first laid into my being. 

Being chronically ill my emotional resources are often stretched and on the days when I am really tired and really unwell those negative comments can end up gaining an importance they simply don't deserve. And being chronically ill you will be told all the ways you are doing it wrong, or how your response, or even you, are essentially a failure.

It's bad enough at a personal level, but for me one of the most heartbreaking aspects of living with a chronic illness is hearing how poorly others in the same position, are treated by those in their life. It's one of those times where I wish others didn't "get it". Where you would expect compassion there is, for many, naught but derision and criticism. Somehow our society has moved to a place where people are blamed for illness. Not just strangers, but family members and so-called friends. All competing to tell us how we are doing things wrong. As if illness, or an inability to recover, is somehow a personal failing.

So often I hear tales from fellow patients where they are told that the way they live their lives, deal with their illness, generally choose to live, are wrong. 

They are too engrossed in their illness. 

They are not trying hard enough. 

They want to be ill. 

Or the old chestnut, "it's all in your head".  

Despite logically knowing that we are doing our best under extremely challenging and often painful circumstances, we are often left feeling guilty or bereft because that little voice in the back of our minds, whispers "maybe they are right?" Somehow we give a monumental amount of importance to the perceptions of others. Others who are not living our lives and have only the briefest and most superficial glimpse of our day-to-day existence. We imbue others with an expert status on a topic they really know nothing about.

A long time ago, I realised that the question I needed to ask myself is, "how do the perceptions of others add to my life?" Do they bring positivity and joy, or do they make me feel worse? And if their ledger came up in the negative I put up boundaries or in some cases, cut people out of my life altogether. 

I cannot prevent others from being critical and negative about me and the way I choose to live my life or deal with my illness. But I can choose the importance I place upon their opinions. 

I can choose me. 

And I am worth it.

I choose to surround myself with those who bring me happiness and joy and who help me see that it's okay to simply be me, warts and all. Those who add to my life, not crush it at every opportunity or when I am most vulnerable. There are some I can't avoid, but I now choose how much weight I give their opinions and put a soul-preserving distance between us. 

None of us can control the actions of others, but we can choose whether we allow them the honour of writing on the slates of our lives. And it is an honour. Our sense of self is precious. Too often we are taught to undervalue ourselves and our needs. We carve the negative in stone, and hold it near and dear. We cherish it and repeat it to ourselves until it is all we can see. And in the end no one is ever satisfied. Not those who criticise. And especially not ourselves. 

In life we have choices, and one is to decide who we allow to define who we are. Have those we allow to direct how we feel about ourselves, really earned that power? Do they add to our lives or do they subtract from that which defines our perceptions of self worth? It's a hard lesson and one that takes work. Sometimes criticism is constructive and sometimes it is not. But by learning to value those who add to our lives and equally put the negative in their place, it can make what is already a difficult time a little easier.

Becoming ill you undertake a crash course in sorting out the wheat from the chaff. You are forced to re-evaluate what helps and what doesn't. You are forced to re-evaluate how you see yourself and how you want to see yourself. There will always be someone who puts you down or tells you that you aren't enough, but those people don't deserve the honour of defining how you see yourself. 

It can be challenging and heartbreaking, but you are worth the effort. Never forget that. 

Cheers
Michelle :) 

Finding Support by Cleaning House.

(I've lost the link for this, but gosh I love it)

One of the earliest lessons I encountered when I became ill is that some people are inherently compassionate, and some are simply incapable of even understanding the term. I also learnt that sometimes compassion comes from unexpected places and sometimes it is lacking in the places where we instinctively think it will reside.

It was a hard lesson.

When I first became ill I had expected that those nearest and dearest would be there. It's a natural assumption. In our time of need we expect that our family and friends will rally. That there will be casseroles and fluffy socks. And much in the way of hand holding and support. Some get lucky. But sadly for many that is a scenario viewed only on their TV screens. The harsh reality is that not everyone will be there as we expect.

I still remember calling my a friend (now ex-friend) early on in my search for a diagnosis. I was in tears. Completely overwhelmed after being told that I may have MS. She promised to come over after work, then rang on her way home to say she was too tired and did it matter if she didn't come over. It hurt at the time and I must admit even now as I type all these years later, I still feel a twinge of that hurt. But that wasn't the first or last hurt that I have experienced over the past seven-years. Sometimes in the form of an uncaring comment, an exclusion, or action. And I know I am far from alone.

Part of me still wishes for the close and large support network that others have in their daily lives. Every day I see people diagnosed with particular illnesses and suddenly there are fundraisers, rosters to help out with cleaning and cooking, and designated drivers to get them to appointments. Admittedly, I instinctively recoil from that kind of attention, but a small part of me wishes I had even a little part of that. But I realise now, as is the case for many others, that it is simply not to be.

I don't have a casserole illness, I don't have a black and white disorder, and I don't have something that will ever get better. I live in a land of grey that is hard enough for me to navigate let alone anyone else. Society as a whole, does not do well with death, dying, or chronic illness. How do you respond to someone who will only ever slowly get worse? There are not many acute moments with Dysautonomia, just the slow trudging path of chronic illness, punctuated with yet another hospital or ED admission. No clearly defineable end in sight. Nothing to clearly fight. Normal parameters of caring, disease path or goals are no longer applicable. Few are those who can stay such a challenging path by our side. And some simply find it overwhelming or tiresome. For some your illness or suffering, is quite simply bothersome. It's a hard realisation to live with. But it is a first step in finding the positive support you need.

Being chronically ill has allowed me to clean house in a sense.

I have no doubt that I would still have a lot of those other people in my life if I had never become unwell. I also realise now that I attracted and allowed others in my life who were never really there for me even before I became ill. Back then a large part of me was so used to being in a certain roll that I never thought of it as a problem, or that I was worthy of better. It was simply how it was. And it had never been challenged. I was very independent and had always managed relying on myself alone. I was used to being the helper, not the helped. I had never been in a position where I needed true and long-term support. A position where my own reserves would run dry. My role had always been as hand-holder, and no doubt I would have continued in that role if my health hadn't deteriorated.

It was a strange and sudden change in many relationships. All of sudden my illness became an inconvenience to others. I couldn't drive to their house as I always had, and it suddenly became too far for them to drive to mine. I couldn't go out often, so they stopped inviting me. I couldn't listen on the phone for hours to their problems, so they stopped calling. I didn't get better and they became bored. I couldn't give them what they wanted so they left. My illness became boring and inconvenient.

Having people in my life who took without giving, or only giving when it suited, was exhausting. Pre-sick I had the capacity to deal with that drain and lacked the wherewithal to see the toxic nature of those relationships. Post-sick I didn't have the emotional or physical reserves to deal with their demands and it suddenly dawned on me that I could say no and that I deserved more.

It took me a long time to understand that compassion simply isn't in some people's DNA. For a long time I blamed myself. It took me a long time, and nearly a year of counselling, to understand that it was okay to say, and actually believe, I deserved better.

I like to think of my current support system as a fine wine. Over the years it has been distilled to those who truly care. I don't have to deal with the hurt that comes from fair-weather relationships. Instead I concentrate on, and am grateful for, the love and support I get from the few in my life who are really there for me. Who give me support without always reminding me how much of a burden my illness is for them.

Not having those negative influences in my life, or being able to compartmentalise those I can't avoid, has been a godsend. A gift that I recognise now, though admittedly, not so much at the time.

Now I have people in my life, in real life and online who are truly supportive. Who get me, my sense of humour and my needs. They are there to share a shoulder or a laugh at need. People I would never have expected have stepped up, and I have also made friends in the unlikeliest of places. And I discovered that supportive relationships can, and do, go both ways.

It is better to have a handful of people, or even one, in your life who truly cares, than to be surrounded by a large amount of people whose ability to care is conditional or inconsistent. Sometimes being surrounded by people who really don't care can leave you feeling more alone than actually being by yourself.

Being chronically ill you get to see the true nature of those who surround you. It is easy to be there during the good times. But when the tough times hit it quickly becomes clear who has the strength of character to stand by you. When those tough times persist or become complex, many may fade away. It's easy to feel abandoned. But it is important to also remember that often those that are left are the cream of the crop and the true of heart.

Sometimes blood and history are not a guarantee of compassion or support, no matter how much we wish it were otherwise. But that moment when you find a person who truly cares it's like a light goes on and you wonder why you put up with less.

Cheers
Michelle :)

Self Compassion.

Now if only I could work out how to pick a better picture as the still.

Michelle :)