When you have a chronic condition, accompanied by pain, it's as though you speak a different language. We certainly see the world through a different lens and sometimes what we hear is not what what's being said as much as, how what is being said will affect our pain.
I'm reminded of this on a simple outing with my daughters, my friend and her daughters.
We all wanted to spend a couple of hours shopping while we were on vacation. Immediately I know it is a challenging and not necessarily "smart" thing for me to do, but I desperately want to do this normal mother daughter outing. To make it as comfortable as possible for me everyone is willing to put it in a time frame that will work. As we plan our outing it becomes clear that I speak the language of pain and the others, not having to deal with restrictions on time and energy, do not.
I know that two hours is a reasonable if not short time for the trip but for me at this time, it is pushing it. It's a compromise. One I think I can live with until there are delays and add ons. I sound like I have a plan with military precision when I see someone wants to go to another store on the way and there has to be a stop at the bank as well. I can hear myself try to reason with them asking them to go ahead of time etc. But I come across as controlling and unreasonable. With a group, it's difficult to explain that it is two hours I have and two hours only. I am tired of drawing that kind of attention to myself so it is often left unsaid. Time and time again it happens to many people daily, they want to still do all the "normal" things everyone else does but it has to be modified so much for everyone else it doesn't look normal any longer. I remember a friend telling me her story about going out for dinner with "the girls" after her spinal injury. She said at first she was so happy to be included and so ready to get out of the house she said yes every time. That was until she got to places she had been assured were accessible only to find the washroom was a full flight of stairs away. There are accessible, comfortable places to eat out but when she found she was dictating where everyone else ate, it had become not very much fun. A simple, and innocent comment like. "Oh that's right we can't go there anymore" made her feel as though she was holding the others back. I get it.
The same can be said for another friend of mine. He has Celiac disease. That is a true gluten allergy, a serious reaction to eating the smallest amount of gluten or even cross contamination from a knife etc. We often eat together and we have learned to modify, it's not a big deal because we make it work. The problem is eating out or in groups of people. He plans carefully and calls ahead and asks all the right questions. Most will say they have gluten free options but few really do. The care of preparation is not there. They use the same fryer for breaded chicken wings for instance as they do for every thing else. The most frustrating is finding a place that says they have gluten free options only to get there and see that isn't the case. It is further complicated by the hordes of self professed gluten free people. Some prepackaged, regulated items have certainly helped his choices, yet the seriousness of the condition is lightened by those who do not actually have an allergy. Restaurants have gluten free options for those people, but for the true allergy it needs to be prepared with more care.
It happened while travelling with us and as we ordered he realized there wasn't a thing on the menu he could have. While we all ate he left found himself a grocery store and found something he could eat while we had our meal.
Advocating for yourself can come across as picky and controlling. It is not, believe me that's the last thing we want but, it is all we can do to make the event doable for ourselves. If it feels like it is taking away from the others we are likely to sit it out. And that's why people end up at home more than they want to be and why sometimes the friends stop calling. We say no one time too many, only to free them to have the kind of evening/ experience you want them to have.
Making an effort is all either side can do, it can be frustrating for both sides as well but it doesn't mean we don't want to be a part of the experience we do, as long as we don't ruin it for others.
The next time your friend says no to an outing and you really want them there, be sure it's clear to them that the accommodation is worth their presence and I bet you will get a yes.
I'm reminded of this on a simple outing with my daughters, my friend and her daughters.
We all wanted to spend a couple of hours shopping while we were on vacation. Immediately I know it is a challenging and not necessarily "smart" thing for me to do, but I desperately want to do this normal mother daughter outing. To make it as comfortable as possible for me everyone is willing to put it in a time frame that will work. As we plan our outing it becomes clear that I speak the language of pain and the others, not having to deal with restrictions on time and energy, do not.
I know that two hours is a reasonable if not short time for the trip but for me at this time, it is pushing it. It's a compromise. One I think I can live with until there are delays and add ons. I sound like I have a plan with military precision when I see someone wants to go to another store on the way and there has to be a stop at the bank as well. I can hear myself try to reason with them asking them to go ahead of time etc. But I come across as controlling and unreasonable. With a group, it's difficult to explain that it is two hours I have and two hours only. I am tired of drawing that kind of attention to myself so it is often left unsaid. Time and time again it happens to many people daily, they want to still do all the "normal" things everyone else does but it has to be modified so much for everyone else it doesn't look normal any longer. I remember a friend telling me her story about going out for dinner with "the girls" after her spinal injury. She said at first she was so happy to be included and so ready to get out of the house she said yes every time. That was until she got to places she had been assured were accessible only to find the washroom was a full flight of stairs away. There are accessible, comfortable places to eat out but when she found she was dictating where everyone else ate, it had become not very much fun. A simple, and innocent comment like. "Oh that's right we can't go there anymore" made her feel as though she was holding the others back. I get it.
The same can be said for another friend of mine. He has Celiac disease. That is a true gluten allergy, a serious reaction to eating the smallest amount of gluten or even cross contamination from a knife etc. We often eat together and we have learned to modify, it's not a big deal because we make it work. The problem is eating out or in groups of people. He plans carefully and calls ahead and asks all the right questions. Most will say they have gluten free options but few really do. The care of preparation is not there. They use the same fryer for breaded chicken wings for instance as they do for every thing else. The most frustrating is finding a place that says they have gluten free options only to get there and see that isn't the case. It is further complicated by the hordes of self professed gluten free people. Some prepackaged, regulated items have certainly helped his choices, yet the seriousness of the condition is lightened by those who do not actually have an allergy. Restaurants have gluten free options for those people, but for the true allergy it needs to be prepared with more care.
It happened while travelling with us and as we ordered he realized there wasn't a thing on the menu he could have. While we all ate he left found himself a grocery store and found something he could eat while we had our meal.
Advocating for yourself can come across as picky and controlling. It is not, believe me that's the last thing we want but, it is all we can do to make the event doable for ourselves. If it feels like it is taking away from the others we are likely to sit it out. And that's why people end up at home more than they want to be and why sometimes the friends stop calling. We say no one time too many, only to free them to have the kind of evening/ experience you want them to have.
Making an effort is all either side can do, it can be frustrating for both sides as well but it doesn't mean we don't want to be a part of the experience we do, as long as we don't ruin it for others.
The next time your friend says no to an outing and you really want them there, be sure it's clear to them that the accommodation is worth their presence and I bet you will get a yes.
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