How to Talk to and Treat Someone With Chiari or any other Illness that involves Chronic Pain
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. Don’t try no to pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper into 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 and 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. Pain Meds 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 to be 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 that day. I cannot plan ahead with certainty but I will still 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 not 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, when you really haven’t.
Help me to see my behavior through your eyes – but take a step back first and try to see it through my eyes.
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 – its my bodies way of telling me there’s a issue somewhere. The 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 very much, but know there’s something else going on inside my head.
Don’t be sad that you cannot take away my pain, don’t feel helpless because you cannot help me. What’s the point in both of us feeling frustrated and useless? Most of the time I cannot do anything about the pain.
If i tell you I can’t do something – I really mean it. If I tell you that I’m 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 is not done by the time you get home, it isn’t because I forgot (well sometimes) not is it because I am lazy, it is because I used up all my energy doing other things. Sometimes all I can manage to do is to sit down and sleep. It does not mean that I expect you to do everything for me, it just means that I cannot do as much as I used to be able to do. I will get around to it – tomorrow I might feel better.
My time table will not always match yours. I cannot help it. That is just the way it is.
My life has changed drastically and not for the better. Please don’t except yours not to change if you’re involved with mine.
Know I still love you, I might shout, I might grumble, I might complain and I might get easy 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 and I have a lot to face up to. It takes times to do so and even longer to accept.
Frustration can bring out the worse in all of us. There are two sides to every coin.
If your behind me in a checkout, church pew, or line, don’t talk amongst yourselves about the scar down my head and neck and take guesses as to how it might have happened. My ears work perfectly well, and I can still hear you. If your concerned then ask me. I’m fine with it – can’t hid it, nor would I want to.
I am not always miserable – but by giving me something else to grizzle about isn’t necessarily good thing either. I have enough to deal with as it is.
I am still the same person and have the same heart and feelings. I am still an intelligent contributing Member of Society. Do not discount my intelligence or drive to succeed for others that cannot. I fight daily for other’s with Chiari Malformations and other Rare Disorders.
What have you done for Humanity Today…Yesterday, Last week a Month or Year ago?
In the end that is all that matters.