WHAT ONE THING WOULD YOU LIKE YOUR FAMILY TO KNOW ABOUT RSD?
1) RSD IS REAL. (the number one answer)
2) WE ARE NOT EXAGGERATING THE PAIN.
3) WE HATE BEING A BURDEN TO OUR FAMILIES.
4) WE NEED YOUR HELP AND SUPPORT TO GET THROUGH THIS.
5) I TRY TO SHIELD THEM FROM HOW BAD THE PAIN REALLY IS.
6) COPING WITH CHRONIC PAIN LEAVES YOU DRAINED EMOTIONALLY AND PHYSICALLY EVERY DAY.
7) PLEASE LEARN WHAT THIS DISEASE IS ALL ABOUT.
8) MY FAMILY IS VERY SUPPORTIVE, BUT I WANT THEM TO KNOW IF I SOMETIMES GET IRRITABLE AND SNAP AT THEM, IT’S THE RSD PAIN TALKING AND NOT ME. I LOVE YOU.
9) HOW SORRY I AM THAT I HAVE RUINED OUR FAMILY FINANCES.
10) I REGRET NOT BEING ABLE TO WORK AND FINANCIALLY PROVIDE FOR MY FAMILY.
11) I AM STILL THERE FOR THEM ALWAYS.
12) THAT EVEN ON DAYS WHEN I “LOOK GOOD”, I AM STILL IN A LOT OF PAIN. IT DOESN’T GO AWAY.
13) EVERYTHING.
14) THAT I AM STILL THE SAME HUMAN BEING, JUST NOT THE SAME HUMAN DOING.
15) THIS DOES NOT CHANGE THE WAY I FEEL ABOUT THEM.
16) I REALLY APPRECIATE THE FACT THAT THEY HAVE STOOD BY ME AND NEVER DOUBTED MY FEELINGS FOR A SECOND, EVEN WHEN THE DRS TOLD THEM IT WAS IN MY HEAD.
17) IT’S NOT IN MY HEAD. (third highest answer)
18) I WANT THEM TO FEEL THEY CAN TALK TO ME ABOUT IT AND ASK QUESTIONS, ESPECIALLY MY CHILDREN.
19) THAT WHEN THEY HAVE TO SAY THE SAME THING TO ME TEN TIMES IN A DAY, IT’S NOT BECAUSE I WASN’T LISTENING BUT BECAUSE RSD TAKES REALLY AFFECTS YOUR MEMORY.
20) DON’T HIDE BAD NEWS OR YOUR OWN PAIN FROM ME BECAUSE “I ALREADY HAVE ENOUGH TO HANDLE”.
21) HELP ME TO UNDERSTAND THAT WHILE I CANNOT DO WHAT I DID BEFORE, THERE ARE MANY THINGS I CAN DO NOW.
22) THAT IT’S OK TO COME TO ME AND ASK TO BE HELD BECAUSE YOU HAD A BAD DAY.
23) I AM THE SAME PERSON UNDER THE PAIN, THAT I USED TO BE AND THAT I NEED THEM.
24) DON’T BE AFRAID TO HUG AND HOLD ME, JUST ASK FIRST IF TODAY IS A “HUGGING DAY”.
25) IT OVERWHELMS ME AND I FEEL LIKE A FAILURE AS A MOTHER.
26) UNDERSTAND THAT IT IS THE PAIN THAT LIMITS ME FROM BEING ABLE TO BE ALL THEY NEED AS A MOTHER AND TO DIRECT THEIR ANGER AT THE RSD AND NOT ME.
27) THAT IT’S NOT MY PARENTS FAULT THAT I GOT RSD.
WHAT WOULD YOU LIKE THE PUBLIC TO KNOW ABOUT RSD?
We asked over 800 RSD patients this question. Here are some of their answers. I am sure you will agree with most of them J
1) How disabling the disease really is – how dysfunctional you become and how much love and help you need to keep your courage up when you really feel like ending your life at times.
2) That even though I have good days, it doesn‘t mean I am all better.
3) That every person I have met with RSD would like nothing better than to go to work, clean their house, and make their own meals. In general, do all the things that the public at large takes for granted.
4) That RSD is very real and it isn‘t “all in my head”, it‘s in my foot!
5) Don‘t criticize me for having a handicapped-parking permit because I “look” healthy.
6) This is a real live debilitating disease and just because you cannot see it doesn‘t mean it isn‘t there.
7) RSD is not only real but VERY real. The nerves are amplifying every little pain so much that when I do something like stub my toe, sometimes I almost faint in agony.
8) What the public needs to realize is that we are NOT beyond hope, but without family/friends support it would be devastatingly hard to get through the day much less the rest of our lives. Be patient with us, be as helpful as you can without doing everything for us.
We need to be as active as we can, which sometimes may not be very much. But as long as we can do for ourselves, we must. When we need help though, please be there for us J
9) The Public needs to know that a person can look perfectly healthy on the outside but be screaming with pain on the inside. If this person complains people tend to think they are a hypochondriac.
10) I have no intention of “ripping off the system”, or taking medicine as a way of government- sponsored highs. I have a disease! I just want the opportunity to live as normal a life as I can.
Just a small sample!
information courtesy of American RSDHope