Lisa,
I see you've already gotten much sage advice from many of our members. My own take on it is that there are 3 types of people in this world when it comes to understanding CP:
1) Those who live with CP & who understand what you're going through on at least a basic level
2) Those who don't know what to do, so they just pretend that nothing has changed -- they walk at the same super fast pace, they schedule hiking trips, trips to the bars/clubs, and are hurt when you turn them down
3) Those who don't know what to do & so they act like your whole life and being is not completely about
CP. They ask about
it all the time. They come up with constant suggestions for you on what to do (99.9% of which you've already tried -- twice). They gossip about
you behind your back, calling them "caring brainstorming sessions". And they treat you like you are totally helpless. For example, I have known some people who when I ask them to slow down their walking pace, they start talking louder, or (my personal favorite) one time the person started describing our surroundings like I was visually impaired. lol I'm not really sure how the 2 are related, but I guess in her mind whatever helps for one impairment helps for another.
In any case, most people genuinely are trying to be helpful. They may be ignorant and misguided to the point where they hurt more than help, but more often than not they are well-meaning. I do not always do this, but when I can (and when I have the emotional strength to deal with this on top of dealing with the pain), I try to educate my close friends/family about
how to treat me now. I know I always thought that it should just be intuitive, but somehow people get panicked or something & forget to use common sense. I get pretty aggravated sometimes, but I have found that just explaining what actually matters & what doesn't seems to go a long way. I would agree with the others, though, that there really isn't any reason you cannot go to the bars. I really think your friends were just trying to cheer you up & make sure to include you with the group. Why not take them up on that? If it turns out they won't accept you if you're not drinking, then forget them & know that we will be here to support you. I just know from my own experience though, that hard as it was to make even minor changes, it really was healing for me to feel like CP hadn't stolen every single good thing from my life. I could still go out with my friends & have a good time even if that didn't include me having a drink.
As far as getting people to actually say/do the right things, I think that starts with trying to be as accommodating as possible of them. After that, there are some things that we just cannot do no matter how much we wish we could. I've got a working list that I share with people of helpful things they can do when interacting with me. I based it off of the job-based list that JAN put together. Here's the link to their site:
http://www.jan.wvu.edu/media/ChronicPain.html I've found that giving people a quick explanation of what's going on -- I usually try to limit it to: I have a birth defect & have had many surgeries; as a result, I often am in pain. Pain is cyclical, so some days are better than others. Some people (like my current co-workers) want to learn more about
my condition, but I've found that less is more unless they are medical students or something where they can actually understand. Otherwise, people start trying to relate my situation. Acute pain is not at all similar to chronic pain, so those comparisons end up not being helpful either to me or to them. After a basic overview, I explain what I need to be able to join in a specific activity. For example, "I love nature, but I cannot walk for long periods of time. I would like to drive as far into the site as possible & then will need to only walk a block or two at a time. I walk slowly & may need breaks in between." I tell them what I do to try to cause as little disruption as possible: "I will rest up the night before. I will meet with my doctor to get some injections to help with the pain and I will bring a wrap around ice pack to help keep things under control." And finally I give them an example of how something worked in the past: "I'm looking forward to this b/c I went for a walk down the lakefront last summer and it was great fun. I only had to stop 3-4 times & was really proud of that. But best of all, I got to spend a wonderful time with my close friends, who took turns walking at a slower pace so I was never left alone."
Trust me, I know that it just sucks that we have to explain things to people. I hate doing it. I'd rather just be left alone most of the time & when needed, have people who can just tell that I'm walking slower and can adjust their pace to mine. But most people who haven't been through something like this, or at least been educated about
how CP affects people, either in class or by a friend/family member, just don't ever learn how to handle it. You could just withdraw from people completely. But I tried that for almost two years & it's really not any fun at all. So for me, and this may not be for everyone, I found I needed to invest some effort into teaching people I cared about
what was going on & how they could help me to be as "normal" as possible by making simple accommodations & by otherwise treating me the same as before.
I don't have it all figured out by any means. I was just asking for help dealing with my new co-workers a couple weeks ago. Things are a tiny bit better with a couple of them (& the worst one lost her job -- so sad, but my days are brighter without her commenting about
how I struggle to get around the office, how I shouldn't be there, how I ought to be resting, find another doctor, etc.), but I have a long way to go. They all really like to read, so I am currently looking for a book about
how to treat people with chronic pain/disabilities/illnesses that we can all read together & discuss. A friend at work is willing to help me with that, so I think it has real potential. It will combine their overly-zealous quest for knowledge with my need to not have to be their constant source of news & education about
CP/disabilities. Plus, I am hoping that it will leave the workplace a better place -- with my co-workers becoming more aware & sensitive towards future workers/clients with some sort of difficulties.
Gosh, though, I sure can relate to feeling so horrible about
not being able to do the same things in the same way I used to. It took me so long just to get to this point & I still have a long ways to go. But it does get easier, I will say that. You will try different things, find some that work, practice & they will get easier. In the meantime, know that we are hear to support you. When no one else understands, I have found that there is always someone here at HW who does. So know that on those really horrible days, you can always turn to us. And on the rest of the days, go out there & give it a shot! :) If it works, you will have found a moment of happiness. If not, you can come here & sob to us. ;) We have all been there.
take care,
Frances