I saw a post in another forum of how to talk to and approach someone with Chiari Malformation and Syringomyelia and thought that I would add my own take on it. Having been diagnosed for some while now and trying to get my life back to normal, I know friends and family have a tough time knowing what to do and what to say sometimes. They do get it wrong at times, they do judge and they do make silly comments, but in general they do not understand. I don't really expect them to fully understand - but do appreciate very much the fact that they are trying.

This post isn't me being self indulgent, although I am going through a difficult patch right now......... perhaps doing this will help me to understand others too on the other side of the coin?

It is a little lengthy, but I PROMISE you that this post has worked out perfectly.

I don't look ill...... although I might have a pained expression in my face which may appear to be outwardly grumpy. Take it that I am in pain and I am trying to hide it from you the best I can.

If I am quiet or in a non-talkative mood, don't assume that I am in a bad mood, I am merely trying to come to terms with what I can no longer achieve, or can no longer do all that I want to do, and that it is very frustrating.

On the other hand, I might be exhausted from dealing with the pain and discomfort, or trying my hardest not to fall over with the balance issues that I have.

Do try not to pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper in to it.

Don't compare me to other people with "similar" pain issues, everyone has their own problems, some worse than mine, some not so. Some people have managed to come to terms with it, I might not have yet. Pain is different in all people. Not even two Chiarians have the same symptoms, although we do share a common bond.

I know it could be a lot worse, and I am grateful that it isn't, I really am, but it doesn't make me feel less pain or feel better. In fact sometimes it makes me feel down that there are people that are worse off than me.

Just because I am in pain, doesn't mean that I can do much about it. Paracetamol is not a cure all. Some medications don't work, some have horrible side effects and give me other problems that add to the stress and feeling of unwell.

Don't tell me what I can and cannot do, don't label me as disabled. I want to try and do the things that I used to so, if I can't, then at least I have tried and have ticked off another box. Don't blame me for trying again and again........ I will get the message eventually.

Don't assume that I am angry or upset with you......sometimes we make mistakes and lash out at others. It is merely frustration with myself. I don't mean it, I might have missed the fact that I have upset you. Don't ignore it, tell me so.....but do it nicely please, lets not start an argument.

Don't think that just because I can do something today, that I can do it again straight away, or can do it tomorrow or the day after. My symptoms can change daily, my energy levels and patience can be sapped by the simplest of tasks one day, and appear easy to do the next.

Try and treat me as a "normal" human being, I will respect that and will be very grateful. Try and encourage me to do "normal" as much as possible.

Don't make exceptions for me, I can do that for myself.

Don't be upset if I cancel long standing plans at the last minute - I want to be there, and I am trying to be there but sometimes I can't and don't have the energy or capability on the day. I cannot plan ahead with certainty but I will plan.

Learn about my condition and you will be better armed to either help me when you can, or be aware that sometimes I do need help and haven't asked for it, or that I really don't mean to be rude or ungrateful. I am very grateful, I need friends now more than ever. You will know why I react in the seemingly wrong way sometimes........it will help you stop feeling like you have upset me - You haven't.

Don't be afraid to ask me how I am......I won't always give you bad news, so don't ask expecting it ;) Sometimes I might - so don't ask if you don't want to listen ;)

Help me to see my behaviour through your own eyes - but take a step back first and try and see it through my own.

Don't think that I am just in pain and that's the end of it - there's a reason that the pain is there - it's my bodies way of telling me there's an issue somewhere. That pain leads to other symptoms, and the cause of the pain can also cause other symptoms. Most of which I have no control over.

Don't be afraid of offering me a hug or giving me a little encouragement - we all need that sometimes. If I reciprocate or give you a smile back it means that I appreciate it, If I reply with a grumpy face - I still do appreciate it - very much, there's just something else going on inside my head.

Don't be sad that you cannot take my pain away, don't feel helpless because you cannot help me, what's the point in us both feeling frustrated and useless? Most of the time, I can't do anything about the pain myself.

If I tell you that I cannot do something - I really mean it. If I tell you that I am in pain - don't ask me to empty the dishwasher half an hour later and get upset if I can't. I will try my best you know.

If you ask me to do something in the morning - and it's not done by the time you get home - it isn't because I forgot (well not always) nor is it because I am lazy (although I still can be) it is because I used up all of my energy doing other things. Sometimes all I can manage to do is to sit down and sleep - it doesn't mean that I expect you to do everything for me - it just means that I cannot do as much as you sometimes expect me to and as much as I used to do. I will get around to it - tomorrow I might feel able.

My time table will not always match yours - I can't help it. That's just the way it is.

My life has changed drastically - and not for the better. Please don't expect yours not to change if you are involved in mine.

Know that I still love you, I might shout, I might grumble, I might complain, I might get easily frustrated. I am very grateful of the help and support - just don't make me beg for it.

I have a lot to come to terms with, I have a lot to face up to, it takes time to do so and even longer to accept.

Frustration can bring out the worst in us all - there are two sides to every coin.

If you are behind me in the checkout queue or at the bar - don't talk amongst yourselves about the scar down the back of my head / neck and take guesses as to how it might have happened. My ears work perfectly well - I can hear you. If you are so concerned then ask me. I'm fine with it - I can't hide it, nor would I want to.

I am not always miserable - but by giving me something else to grizzle about isn't necessarily a good thing - there's enough right here to be going on with for now.

No, it honestly isn't aimed at anyone in particular, just thoughts running through my mind when I think of my interaction with others over the last few months. perhaps I will add to it over the next few......

I have edited this to include a reply that I got back almost instantaneously from a very good friend of mine. She has probably been the brunt of some of my more moodier moments, but has also been the provider of much needed support at very difficult times for which I am very grateful for. She has a skill of being able to tell me, quite bluntly when I am being an idiot and when I am being selfish.

Thank you very much for grounding me.

Hi there, well I read and re-read your post, it was very emotional and difficult to read, I hope it helped you to release some tension and issues and made you feel that it is better organised in your head. I would like to give my take on a few of the things you said and I hope you take them as intended, that is to help you see chiari and its devastating effects not only on the sufferer but on those who love and care for them too.

First of all we all feel ‘why did this have to happen to you’ so we agree on the fact that it is simply not fair that a perfectly healthy strong fit man is struck down in what is generally considered the prime of his life, however this is a fact that has to be come to terms with and look to the future to how it can be managed, dealt with and the rest of life tackled in the best way possible so everyone involved can have the best quality of life possible.

Please don’t assume that cause we are not going through the physical pain with you that we are not feeling the mental stress and strains of this illness with you, we will never fully understand the full implications of this illness on the human body but please credit us with some level of understanding and give us some points for at least trying to understand!

Try not to confuse sympathy and understanding for pity, its very difficult to judge the mood and therefore the response to our words of support, as you feel different day by day depending on the severity of your symptoms what one day is taken as words of encouragement are the next day taken as patronising. We struggle just the same as you do with mood changes and the frustration of it all. Help us to understand you better by giving us some clues, if you are in pain say so, if you are just having a grumpy day say so, if you want to cry and let it all out then cry, if you are exhausted and need a rest say so and we can help, and most importantly of all if you want or need a hug just ask, its probably one of the only things we are qualified to give and some of us are particularly good at them!

If you are struggling with day to day jobs speak out, if we know your limits we wont ask or expect too much of you, but on the other hand if you are having a good day and can manage more than usual feel free to jump in and offer to do more, don’t then feel that we will take it for granted that you can do this and more each day, lets just take it on a day by day basis and work together to get the balance right and each do our bit to make life run that little bit smoother!

Don’t you be afraid to ask us how we are, we have good days and bad too, ok not on the scale of pain or discomfort that you do but all the same we get aches and pains that make us feel low too, as the age old saying goes ‘no one ever asks after the carer’

Our lives have changed too, not in the same way, but try and see it from our point of view, we have stood by and watched a very special person, change and fade infront of our eyes and been mostly useless to do anything to help or assist or change things, it is devastating to stand by while a strong rock of a man who was once the life and soul of any party or gathering, who we looked to for laughter and jokes and cheering words, slowly turn into a dark brooding shell of his former self, we want the old you back just as much as you do, we miss the bright cheery guy who light up any room with his cheeky smile.

Help us to help you help yourself, lets work together rather than fight each other, as a united front we are solid, we cant cure you that’s for the doctors to work on, but we are the ones who are here for you every day, we care for you, we grieve for the person we have lost and we hope and pray for you to stop being in pain and come out of this as happy and together as possible!

Now a lot of this is probably a bit of a shock, and it is just my point of view on what I have seen and heard over the last months, I might be out of order and most of it is not really my place to say but I really only want you to know one thing, we are here because we care about you, your pain is our pain your bad day is our bad day, we try our hardest to understand how you feel and yes we do get it wrong sometimes, so we are sorry for that but please cut us some slack and acknowledge that we are only human and trying to find a way through the crappines that is chari.

Big hug (redeemable any time)

A friend

An absolutely perfect reply in every way, and one which will give me lots of food for thought. You are right, posting this has helped me very much indeed - I just needed to hear the answers I guess ;) you are a star.

The following is NOT addressed to anyone in particular at all..........

I have to admit, I didn't write my post bearing any thought for those around me. I did do this purposely to try and get an idea of what it is like from the other side.....one of my published reasons for writing this post if you notice was just that.

I think any Chiarian or someone who knows someone with Chiari / Syringomyelia or any other similar condition can learn a lot from this. I have! I promise you that it has not been set up in any way......... this is how it is in a nutshell.