I know this is long, but please read through it. I gave/sent this to a lot of my family/friends. It seemed to help them understand a bit more. No one understands Chiari unless they've lived with it! Hope this helps!
Chiari Support: How to help me, help myself and so on.
Having been diagnosed for some while now and trying to get my life back to normal (whatever normal may be), 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 it more too.
It is a little lengthy, but I PROMISE you that this post has a purpose.
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 just lay down.
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. 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 checked 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, let’s not start an argument.
Don't think that just because I can do something today, that I can do it again, or can do it tomorrow or the day after. My symptoms can change daily, my energy levels and patience can be drained by the simplest of tasks one day, and appear easy to do the next.
Try to treat me as a "normal" human being, I will respect that and will be very grateful. Try to 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.
If I chose to be alone and spend time in my room, it is not because I don’t want to be around others. It is just easier sometimes to deal with the pain when in a quiet environment.
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 behavior 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 there are many other affects caused by this condition. 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 complete a task and then get upset if I can't. I will always try my best.
If you ask me to do something - and it's not done by the time you think it should be - 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, and 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.
I am not always miserable - but by giving me something else to worry about isn't necessarily a good thing - there's enough going on right now.
Although I may seem to take all your help and support for granted sometimes, always know that I appreciate all that you do.
Sometimes I get angry because I want you to understand what I am going through, even though I would never wish this on anyone.
Be patient with me, I am doing my best!
