How do you explain to people why you cannot do certain things?

Lonelyheart---

I'm so sorry that you deal with this at such a young age.  I struggle with this as well.  I'm not as young as you (38), but I definitely don't have a foot in the grave either...Personally, I would let some of the closer friends that you have in on your "secret".  People that do not have chronic pain do not GET chronic pain.  I explain this to them by asking if they have ever had a migraine.  It's the same principle, basically.  If you've never had a migraine, one simply think it's a bad headache; which it TRULY is not.  I have found that when people ask me what's wrong (keeping in mind that these are people that do know me), I've found it best to just keep it simple.  I simply say, "It's not a good day" OR, "it IS a good day".  That way, I don't feel like I'm burdening or "whining"...it's short and sweet and to the point.  I get tired of telling the story over and over; I can only imagine that people get tired of hearing it.  I hope this helps.

wishing you a pain free second, minute, hour, day or whatever you can get---

k

Lonelyheart,

I can completely relate to your situation. I too am young, it sounds like of similar age to you, and I too have found it hard to communicate. My friends will be sympathetic at times, but they never truely understand the extent of my pain, which is especially frustrating. And frankly as much as they care, they don't care. People, especially young people, I've found, are often too involved in their own lives, and they get tired of hearing about other people's complaints. So, similarly, I've also become fairly reclusive.

Fortunately, I too have my parents to support me, but even at times I feel that they do not understand what I go through. One of the best support systems for me has been my animals, especially my dogs (hence the name), they don't judge and only offer unconditional love and support. Although unfortunatly, being away at school, I don't see them as often as I would like. Chronic pain is a lonely disease. I guess you just have to become your own best friend, and hope that you can find those lucky few who will accept you for who you are, pain and all. It goes both ways: you can only accept people for who they are, and make the best out of it. The ones that are truely your friends will stick by you no matter what.

Hang in there.

-caninesupport

Good post PA. I could not have said it better myself. I try hard to interact with people who in the broad spectrum of things "Don't get it" and though I have to repeat myself a million and one times it sucks to have to do it. But then again if I can reach one person who wishes to know more and feels that extra push to see things the way I do, then its been worth it just to spend that extra time explaining things.

Hubby has been my rock through all of this and I think that if I did not have him by my side I would be quite lonely. He takes me to my appts., talks to the doctors about how he can help me through this and is there when I am depressed or sad about my pain. Some may think that I am lucky to have him by my side, but I think I am blessed by having a husband that understands what it is like to go through so much pain and deal with it on a basic level.

Until next post.........god bless you all and I hope this night brings you all a little more rest.

Love

Scarred

Tom,
As usual, you bring up new and interesting points. Will we accept others with disabilities? Very insightful. We all grow up in a culture where there is huge stigma against chronic illnesses - physical or mental. And if we're honest, we have to admit we have learned some of it. So in asking others to accept us, we have to challenge our own inner biases, right? May seem like a no-brainer, but how did you and the group work through this, Tom? Did you discuss it openly, or was it something you worked thorugh in private?

PaLady

Hi again my Pa Lady: You really made me think ? Yes I did not want to accept not only my problems but others with disabilities also at first. Then i met really nice people and was able to see that there is "life" in pain.
Still pondering ? ? ? ? Your friend in pain and life. tom

You know that brings up another point. I have always tried very hard in the past to keep an open mind and care for people that had disabilities, never thought that I'd go through one myself. IMHO people are human by nature and the extreme pain that one feels is directly related to all those around you. I have to believe that their are some out there alike to me and that I will find someone that can understand my point of view, but then on the other hand I think of the times that I have spent alone and how lonely it felt to be alone without anyone to talk to about this. Now I realize that whether we are or are not in pain, it is easy to blame ourselves for our problems. I went through I think the five stages of grief when I first found out that I would never be the same again. First I was angry...trying to blame everyone else for my problem....then I was sad cause I thought that this was my fault and that if I had only not taken the job that maybe I would have been ok. Then I went through a period where I denial where I thought that things had to be fixed. I went through bargaining, where I bargained with the good lord upstairs for more time with a healthy back. Now I am at that acceptance stage where I have accepted that I will never be the same again and that gee if I can't fix the problem I will learn to live with it as I am.

It is easy to feel alone when you are plagued with pain, but accepting your limitations and dealing with the issues is quite hard to do. I still have points where I blame myself for my troubles, but then I realize what I am doing and quickly change my thoughts. The hardest part of this whole thing I think is that I have to live with this pain and that if I do not take the initiative to be more aware of what the docs are telling me and work with my pain management then what have I accomplished?

On a more hurtful note I just got word from my SS disability that the judge that heard my case still thinks that I am not disabled. So we are on to the next stage.

Hey Lonelyheart ~ I am new to this site a newbie to CP but I have been so grateful to all these folks for their time and advise and they are right, it's great to come to a site where others understand and you don't really have to say much, just by being on the site they know you are looking for someone to share this crazy feeling with! I do know that people are sympathetic only for a brief time and they are not sure what to say after that. I don't tell very many people anymore that I am in pain. As they said above I just say it's a rough day or that I didnt' sleep well. I have found though that those I choose to share with are trying very hard to get it. Right now even my own husband doesn't yet understand the "new me" can't do the same things I used to (of course, I truly don't either to be fair !) but he is trying and I know someone will understand you if you meet people you feel you don't have to impress. Does this group know of a place where you can meet/hang out with others in CP? Are you allowed to do that on this site ??
Maybe theres someone in the same place as you in your area ? Anyway, I am just glad to have you all to talk with !
Writing seems to make the pain less because I am distracted !!!
Here's to distraction from pain !!

Dear Lonely,

I kinda get what you are saying. I was diagnosed with Chiari at age 21 after falling down a flight of stairs (which initiated on-set of symptoms). At first, I was terrible at trying to explain what was going on. Then, I just gave up trying because it seemed to me like it just made people say a lot of stupid things. The next year, a friend of mine from childhood was diagnosed with a rare cancer that had tumors that moved throughout her body. She had frequent surgeries as the doctors tried to "catch" the moving tumors. People said a lot of dumb, hurtful things to her too, though. They thought that since she kept a positive outlook that she must not really be sick -- how's that for irony? They complained to her about their everyday problems with everything from hangnails to break-ups as if they were on par with dying from cancer.
But my friend remained strong & over the next 5 years before her death she taught me a whole lot about living. She met and married a wonderful guy and had friend after friend lining up to speak of what a wonderful gift it was to have known her. As a tribute to her, I try to share what she did with as many people as possible. I'm not nearly as good at it as she was, but still, it really changed my relationships & my outlook on life and I hope it can do the same for you.
1. Have a 30 sec, 1 min & 5 min blurb about what's going on to share with people. After that, just say you don't like to spend too much time talking about it & is it ok to talk about something cheerier?
People generally can't seem to handle more than that. I'll tell them the 1 or 5 min version the first time I say explain
it, and then use the short version as a quick reminder if they ask me what's wrong. Yes, if I have a huge set-back or
major surgery I spend a longer period of time talking with 5-6 of my closest friends. In general, though, I tell people that
I have a rare neurological condition/a rare birth defect that I needed surgery for. The surgery didn't go so well & so I
need to keep going back in for minor surgeries & treatments on a regular (like monthly or sooner) basis & I take a lot of
medicine because all of that is really painful. That seems to get across the basic idea that I can't do as much as they might
be able to do as well as more detailed accounts but without overwhelming anyone. If they say something like "that
stinks", I agree with them; then, I bring up about moving on to happier thoughts.
I also bring up the "cheerier" line when they say something dumb like "everything happens for a reason", "you need to
search your heart, ask God to reveal your hidden sins & repent" or "how can you believe in a God who puts you in so much
pain?". I used to argue with people and explain why those were ignorant & hurtful things to say, but we both seem much
happier now when I just say "oh. huh. ok. well, anyways, I don't really like to talk about it much. New topic. How
about Let's pick something cheerier this time." If they don't have any ideas, I often ask them what's the craziest
thing they've ever done. When I tell them my craziest thing, we're both laughing and they usually don't go back and
bring up the pain again, at least not in that conversation.
I personally really do need to spend most of my time talking about happier things. If you need more time to talk
about how bad things are, then maybe a support group or therapy would help. I guess it depends on what you need.
2. Tell people what you expect of them.
I tell them that I can't do everything the way I used to, but I try to change things around a bit so I can still do as much
as possible. I also tell them that I can't move so fast & that they may need to either walk slower or wait for me to
catch up with them sometimes. I also tell them if I need to just pretend everything is peachy & be the life of the party
for a while, or if I want to do a quiet activity without a crowd of people.
3. Tell them what to do in case of an emergency.
I found no one likes the gritty details & I don't like telling people what meds I'm on, so I just tell them that my
Dr's phone number is in my phone & my In Case of Emergency card is in my wallet. I've stopped telling people
that sometimes I blackout from the pain because it kinda freaks them out & most of the time it doesn't happen. The
card tells them all that & it lists my Mom's numbers, who knows all those details.
4. Believe in people.
Yeah, people do say dumb things sometimes. And there are some young people who not only haven't ever experienced
debilitating pain, but they can't even imagine what that might feel like. Some of them might never figure out
how to develop a relationship with someone who's life clearly is not all sunshine and puppy dogs. But you might be
surprised what you find if you go into the situation believing that people will rise to your expectations & expecting that there
are kind and supportive people all around you who can enrich your life & be enriched through knowing you. Before you
know it you will find some people who will be surprised as what a (funny, smart, patient, caring, friendly, sweet ... I don't
know you but I'm sure there must be something positive about you) in spite of your pain.
5. Know your limits.
If you can't do something, just say it. You don't need to give an explanation. Just say you really wish you could
join them/help them/do something yourself but you can't so could they do something else that you could participate in/
try calling so-and-so to help/accept a different kind of help/help you or offer any guidance about how you could
take care of something you can't do on your own.
6. Remember other people have their own problems.
Especially when you're in your early 20's. The whole world is before you & you think you can conquer all the
problems you face, but somehow it never seems to work out that way. Whether it's a bad grade, or a crazy date,
or car problems, or the flu, everyone is facing obstacles that keep them from achieving everything they want. Some
people are more successful than others, but then they get ulcers or heart attacks and such. Really, truly, the quicker
I started asking about & listening to what was going on in other people's lives, the quicker they were to be more
empathetic about my struggles. No, chronic pain is not like bad grades or the flu, but they really aren't likely to
understand that anyways. I've come to believe that no one can perfectly understand someone else's problems
anyways (except, in my opinion, God) -- even when they suffer from the same condition, they experience it differently --
so I had to choose between developing deep, lasting friendships or trying to get people to understand an experience I
wouldn't wish upon my worst enemy.

I've really been impressed how different the last 6 years have been compared to the first 4 (3 pre-surgery and 1 post-op -- If you haven't done the math already, that makes me 31 now). There will always be people will always say dumb things. They would have found dumb things to say to you even if you weren't in chronic pain. They would've said you haven't accomplished enough or didn't advance in your career and finances quickly enough or didn't volunteer enough or something. People always seem to think such individuals are nicer to people with cancer. I'm not sure why that example is always used for comparison for everything from chronic pain to depression to ADD, but it's just not true. Lots of people are mean to cancer patients when they're in between surgeries or radiation/chemo. When I had my crainiotomy, though, people came out for me the same as for the cancer patients. When I was in the hospital for over a week from last Christmas Eve through New Years, even the silly nay-sayers sent flowers and came to visit me in the hospital and held my hair back while I got sick and helped talk to the nurses when I would scream at the top of my lungs from the pain until I lost my voice entirely. Some of those people were my very best friends, others went back to not understanding why I couldn't keep up with the housework after being out of the hospital for a couple of weeks. But I want people in my life so I count that as their "disability" and try to figure out ways to change things around a bit so they can still do as much as possible with me -- I "walk" slower in how much I share and I "wait for them to catch up" to the level of understanding and empathy I hope to one day see in them; and I practice patience because I know more than anything that is what I need people to show me.

Anyways, though, that's what works for me. I'm kinda surprised that with most of my friends now we can talk about a lot
of things besides my pain, but at the same time I see them gently say "maybe not everyone could do that" when the group is brainstorming about things to do. It's really nice to see that & it never would have happened if I wouldn't have made the choice to have faith in them. btw -- the three people that just couldn't handle the idea that I can't do everything I used to be able to do have been more than replaced by the dozen or so new friends I have made who are happy to know me, strengths, limitations and all.

Frances,
I was also very impressed with your post - and the wisdom you display for such a young age. Of course, maybe having a chronic illness fast forwards the wisdom clock a bit.

I'm going to print it out and read it more closely. Lots of pearls in there.

And by the way, I can't remember if I ever welcomed you to the forum - but welcome, even if it's a bit belated!

PaLady

Hi again Francis: I was reading another post and saw Your name and when You described your cervical problem --well-- while we both had different surgeries we both kinda have the same outcome. My entire neck was fused front and back but at the base of my skull and at shoulder level--- in lay mens terms is too weak to support the fusion and has caused my screws to come loose. I've been all over the USA to every so called expert and another surgery would make me a vegetable or kill me. To answer my question as to pain, weakness these experts have told me there is nothing "right now" they can do for me and tell me to stay off my feet ! ! then they refer me to pain management. I need to have my left knee replaced for the second time and a pain pump will be installed after the knee surgery.
Iam extremely happy to have You with us. Your pain friend Tom

Francis: I am pleased to meet you! I am also saddened by the fact that you too have to join us on the HW forum. It's horrible when a Neuro tells you that there is nothing more that he can do to stop the cycle of pain that wracks each one of us. Your post reminds me that we all have our "Demons" to deal with as we try to cope with our pain and the unstopping extras that come with it.

Its good that you try to at least deal with people on a daily basis with your pain and how to explain to them what is going on with you. I have too an experience with that that I thought I would share with each of you that I think you will find pretty weird; My husband's old Part's Manager has always been the type of person that mocked my pain. He has "Been there done that." with two fusions and never had one problem with his back after the surgeries. But here about three years ago his mind was changed as far as what I go through on a daily basis when he was riding a horse and the critter dropped him from his back and rolled on him, causing many broken bones and broke his back as well. After many weeks in ICU and several surgeries to correct his back pain he is now in constant pain. I saw him a week ago and he told me that he now understands what I am going through daily with my pain. Too bad it had to take a serious accident to make him see clearly.