I'm new to this so I'm not sure if I'm doing this correctly..
I just have a question..
I have pretty severe chronic pain and chronic fatigue that is very debilitating.
My mum is my carer, and my question is regarding this.
Every time I say how I am (ie. I'm really tired, I couldn't sleep.. I'm in an awful lot of pain today, etc) her response is alway something about herself like 'yea I'm tired too', or 'yea I have a headache'.
I'm don't want heaps of sympathy, and I'm not super sensitive about people complaining about their health problems that may seem minor to someone with chronic pain.
If this was her response sometimes, but not always I wouldn't have a problem..
The problem is I find it extremely lonely. Because this is always her response, every single time, I feel like i'm on my own with no support and that no matter how bad it is I can't say so. But if she doesn't know how I am, she doesn't help me with things I need and has unrealistic expectations...
If she is in pain or tired, I always show sympathy and ask if there's anything I can do, would such and such help etc.
My question is, why does she do this?
Is she just being insensitive?
Is she sending the message she doesn't want me to complain and keep it to myself?
Does she think I should toughen up?
Does she actually not care?
I'd love to hear what others think.
More than anything, I just feel so lonely and isolated.
I can't talk to her about it - she doesn't talk about things.
But maybe if i could understand why, it might make it easier..
As Johnno mentioned, that letter about people who suffer from chronic pain can be quite helpful in showing others what it can be like. I gave it to someone close to me to read, and she was like "Wow - I'm not like that, am I?"
The answer to that was "Yes", but the answer I gave was slightly more diplomatic.
Reality is, unless someone has experienced chronic pain, they don't really understand what it is like. Their headache might be painful - to them, and for that moment - but it's not chronic.
From my personal experience, I've stopped outwardly judging people when they make those kinds of comments, but inwardly, I'm thinking "Yeah, nah - you don't understand what it's like. Come to me when you've had that headache for two years, and maybe then we'll talk".
Feelings of loneliness and isolation are quite common with people who experience chronic pain.
If you can, speak to your GP, tell them how you are feeling, and ask for a referral to a psychologist or counselor.
I recently started seeing one (only two appointments so far), but it's good to talk to someone in a "safe" environment, where you can talk about how you are feeling, your concerns and they may be able to offer some different perspectives.
You might be able to get an amount of sessions covered under Medicare, but if you can't, and if money is a bit tight, have a chat to the psychologist or counselor and they might be able to arrange something (my psychologist understands the situation I'm in and bulk bills me, which has been very helpful).
Just a thought maybe not mention how you are for a week or so and see if your mum asks how your doing. I think it becomes a bit overwhelming for parents or partners as they just can’t do much to alleviate the pain or help us. She must care or she wouldn’t take on the carer role
As Darren mentioned a psychologist might be a good idea, just to vent to ( definitely looking into this myself), As chronic illness is very isolating and we have very few people we can genuinely talk to about it.
I am newer to posting on here too so am not sure this will go in right place. I have been reading forum.. to not feel alone because if there is something hard to explain to others or to feel lonely, it is being in states of not being able to speak from pain or describe what is not 'a headache'.
I thought there was some really good advice so far.. and I have always loved 'the letter' .
I wanted to ask you to think about are you in the process of learning to live in a 'new' body? Or limitations.
Is your mum new to this care role and you guys are working it out? Are you able to get away from her sometimes, within the space if her mood or lack of sensitivity is effecting you?
I have learned on my journey to teach my partner. When its got to the no words stage..I tell him later.....No... I was not just giving you the evil stink eye earlier. That is another story, how we have managed that interaction but it used to be a regular problem that happened and it changed.
Some people in my family will not listen and so I don't tell them more than once. I stay away. Or tell people that get it, or only if I need an adjustment to my environment. Or arrange to be not in proximity to them unless it is a 'good' day.
If it is your carer, well my commiserations and they may need some empathy training....from someone else- another family member she respects???
My long winded comment I was trying to get to- if you are newer to this situation, can you make a strategy with yourself to get some independance with your body, in the space. So when your mum/ carer is being what sounds like dismissive you can get time out. This might be finding ways of having time out in the physical space you share with your mum. Sorry if this sounds obvious, I view alot of the world through the eyes of my lived body experiences and how to navigate limitations & frustrations.
It sounds like a difficult situation. Good luck and let us know if anything has worked. Its important your mum backs you up and knows your doing your best, whatever mood shes in. Take care