I have had the best two weeks (that is physically). I can’t remember another time in the past ten years that I have had so many good hours or days so close together. I will share why I have been feeling better later this week. But for now I want to share what it was like to return to the land of the living.
For the past ten years I have become someone who can rarely make future plans because I never know if my body will allow me to fulfill the commitments that I have made. Whether it be attending homeschool park days or church, I never know until an hour before if I am going to be physically up to attending. The hardest thing about living with chronic pain is explaining to people, that my symptoms change on a daily and hourly basis as does my pain level. And unlike having the flu or any treatable condition mine is never going to go away. Through the years I have not been able to attend social functions as often as I would like. While my husband and children understand this, other family members and friends just don’t get it. I am guessing that they might get it if they saw me crying from the pain the way my husband and children do. I could invite people over to view me like a zoo animal on my worst days, but what kind of person would be like “oh yeah, let’s go watch a woman cry”.
In the past I would miss 1-3 weeks of church in a row and would always dread going back. Not because I knew that I would be physically exhausting myself to do so, but because of the comments people would make. This is not a slam on the people from my current church. I have had the following experiences at other churches and family get-togethers as well. I understand people mean well and are happy to see me. I just wish for them to think before they speak.
When a friend or family member has a chronic pain condition, please remember that their condition isn’t going to disappear. Below is a list of what has been said to me and what I would rather they say.
What they say (What I would rather they say)
1. Welcome back, glad to see you are all better!! (Welcome back!)
2. Yeah, your healed! Would you like to join this group or volunteer for this one? (Welcome back!)
3. Welcome back to the land of the living! (Welcome back!)
These are just a few examples, but each imply that the time spent lying in bed or on the couch in pain was no life at all. While I may agree that it sucks, it is MY LIFE, I have no choice. When my body won’t do what I want, I have to do what my body wants. My point is that it is ok to share that you have missed me, just don’t expect me to be able to jump in and do what the average able-bodied person can do. In the past I would become terribly upset by these comments, never really knowing how to respond. Ten years later and I have finally come up with the perfect reply. It is this “Thank you, it feels great to be here today. No, I am not healed, just having a good day.”
Well after having one of my worst years ever, my reply seems to have helped. This past Sunday was the first day I had been to church since Easter. Several members have seen me thru the year at the park or grocery store, and I practiced my reply during those outings. As I prepared myself mentally for the onslaught of greetings my stomach began to knot up. When we arrived at church I took a deep breath and repeated my reply in my head. Well for the first time ever, not one person said anything inappropriate. Instead it was this: We have missed you, so happy you could be here today!!!!
So many say they want to be treated like everyone else. Well, I don’t. I live in pain and while I do not expect or want pity, I do want to be treated with the respect that shows some understanding or compassion for what I deal with on a daily basis. It appears my church family and homeschool family understand this and have made attending the events I can pleasurable. Now the trick will be getting my others to grasp this concept.
I am so thankful that I have been able to enjoy time outside my home with people I care about and hope to do more in the future. But for now I am thankful that the number of people who understand what I am going thru is out numbering the amount that don’t.
With that said I am getting ready to head out the door to attend our church’s Advent soup supper and service.
The Disabled Diva