Feels like people don't understand or just keep forgetting.

Phenex

Sometimes it feels like people just don't understand what I'm going through at all.

I'm thankful to have good people in my life, but often it's as though they have this constant amnesia in which they continously keep forgetting that more often than not, I'm ill and tired need to pace myself at times or even need time to myself to rest and recover my health back.

So they keep putting me in situations that are extremely exausting for me and pushing me to my limits, which more often than not, makes me feel even more worse for wear in the long run.

Normally if I have the energy to, I will go out of my way to help others, even in sacrifice to my own health, but I have my limits.

Still, people get upset with me when I eventually have to turn them down and try to explain the situation to them yet another time. They somehow think that I am being rude, selfish or unreasonable or that I'm making excuses.

Basically my birthday is in another day or two and I am in no condition to celebrate it and people don't seem to understand that. They've just decided they are going to throw a big surprise party for me and I honestly can't do it. I've told them this and I won't be going.

Don't get me wrong. I would love to be able to celebrate, but I've been so ill and utterly exausted these past few days and aching all over that I just can't. I need to rest and recover right now. Surely that's not unreasonable of me.

How is it that people keep forgetting about this all the time? It's like I have to constantly be reminding some people.

I suppose it doesn't help that I don't have any official diagnosis for any of this and therefore can only explain things through a means of how I am feeling, to which I feel as though most people can seldom really relate to.

Rosie_Scope

Hi @Phenex I can totally empathise with this. I have limited energy as part of my conditions and people do often forget that I might need to do things differently. It's exhausting having to explain every time that you need to rest, and can be really hard around birthdays and celebrations when people want you to be celebrating.

I found it took a while for people to adjust to what I'm capable of doing, and though it's better these days, people still forget now and then. It's usually out of kindness that they want me to do things, but it's no less frustrating when you don't feel understood or they react badly to you cancelling on them.

The best approach I've found is just being firm but gracious when turning things down, or sometimes suggesting alternative activities that might be more suitable for your energy levels if you can manage it. Eventually I've tried to surround myself with understanding people and have been learning not to waste my energy thinking about other people's feelings too much. But it's definitely not unreasonable to take the time you need to recover, your health is the most important thing and you deserve to relax and take it easy when you need to.

I hope you're still able to enjoy a relaxing birthday, whatever you decide to do 🙂

Phenex

Thankyou for your kind reply.

It's refreshing to know that there's others out there who can relate and understand.

You actually had some really good suggestions there.

In future I will try suggesting an alternative activity like you specified.

Maybe then I won't feel so guilty about saying no to people.

Rosie_Scope

I do also sometimes separate my body from my self sometimes, if that makes sense. So saying things like "I would love to do that, but my body can't manage it at the moment." and you can follow on with "perhaps we can do x instead" or "maybe another time" if you're not feeling up to whatever it is. I find that can take some of the guilt and blame off you as a person a little bit, by saying it's not me that doesn't want to do the thing, it's my body getting in the way. Just something to try anyway!

Welcome to the community, by the way. Hope your birthday was ok if it's already happened and that you get some better days soon 😊