by Maggie Buckley and Carolyn Noel

1.  “Just LET ME DO IT!!!”

Maggie – I remember an experience I had with my cousin while traveling in Las Vegas. She kept swooping in to carry my stuff, pick up my purchase or pick up my food order just as I was reaching for it. I had to explain to her that I would gladly ask for help when needed and that I understand her intentions were good, but I was feeling rushed. I understood that she was trying to help me to move forward or out of the way in lines, etc.

I explained that Ehlers-Danlos Syndrome requires me to pause for a moment before picking up anything so that I am properly aligned and won’t drop the item, lose my balance, injure someone or injure myself. Wow! That explanation typed out like that makes it sound like I’m helpless, inept, prone to injury and SHOULD be asking for more help!

In actuality, I’ve lived with this wonky body for many years and have overcome a variety of injuries so I’ve figured out some great ways to cope and carry my load. A certain amount of effort is actually a good thing for me; i.e., therapeutic exercise.

So for all of the loved ones out there–maybe take a deep breath and wait a moment before swooping in. Relax–take a moment to smell the roses. Make eye contact with me to see if I’m struggling. Ask me if I need help before taking control of my stuff. Because when you just take over, you make me feel less than a person, or incompetent, or like I’m a burden or a slow poke.

2.  “Get over yourself!”

Carolyn – When I first moved to Georgia, I was in a wheelchair, was not allowed to drive (and didn’t have a car anyway) and I lived a mile from the nearest bus stop. The pastors from my church used to call me up and ask if I needed a ride to the grocery store. When they moved, they asked some other church members to do the same. Why? Because they knew I hated to ask for help and I would wait until there wasn’t a thing to eat in the house before asking for a ride. I’ve always been extremely independent and it’s hard for me to ask for help.

It was getting close to a new school year and my daughter was getting ready to start high school. We needed to get to the mall and—once again—I didn’t want to be a burden to anyone—so—my daughter pushed my wheelchair down the side of one of the busiest roads in our county. There was no sidewalk and along the whole mile to the bus stop I was terrified. The cars were coming from behind us and I couldn’t see and felt even more helpless. Somehow—we made it to the mall, purchased clothes and got on the bus to return home. The return trip down the side of the road was even worse. This time, I could see the cars coming towards me and, to add insult to injury, it was starting to get dark. That was the first—and last—time we ever tried to ride the bus.

I totally agree with Maggie that sometimes people help too much. But – sometimes you have to just get over yourself and ask for help. One piece of this I’ve forgotten is the joy I get from helping others. When I don’t ask—I’m robbing them of the opportunity to experience that joy.

3.  “Focus on Joy.”

Sometimes we all feel guilty when we can’t chip in and help. For me it’s usually at holiday meals when everyone is helping clean up and I manage to make one trip from the table to the kitchen and have to sit down and watch as everyone else pitches in. As Maggie and I were discussing stories, she shared this…

Her mother had scleroderma and suffered in chronic pain for over 20 years. Maggie once asked her how she dealt with living with pain and the fact that she couldn’t always do the things she wanted to be able to do. Her mom shared these great words of wisdom—“Focus on joy!” She turned the question back around and asked Maggie, “What do you remember about your childhood?” You see, when looking back we won’t remember how clean the house was, but we’ll remember the love and the joy.

4.  “Ask us!!!!”

Sometimes loved ones are either at one extreme or the other. Either they’re tripping over themselves trying to help us or they’re not asking at all and assuming that we’ll just say no. Never assume that we can’t do something. Ask us. Invite us. We’ve both had times where we weren’t invited to social events because our loved ones just assumed that we couldn’t do it and they thought they were sparing us by not “rubbing it in.” The truth is—it’s more upsetting to be left out. To be treated as “disabled.” No one wants to be thought of as “less than.” Ask us. If we’re not up to it, we’ll say so – but maybe, just maybe, we’re willing to spend a few spoons (see The Spoon Theory) so that we can attend.

5.  “Sometimes you just have to laugh.”

Carolyn – I’ll never forget the day I went shopping with our ladies’ group from the church. We were in a 15-passenger van and since all of the ladies were much older than me, I climbed to the very back. My wheelchair was stored by the doors and when we arrived in the parking lot, they unloaded my chair and everyone got off of the van and started toward the store. By the time I climbed out of the back and got down from the van, the only person left was Miss Dot.

Miss Dot was 90 years old and one of the toughest people I know. She stayed, helped me out of the van and into my chair, and then pushed my chair uphill to the store. I remember looking around to see if anyone was watching, thinking of what a funny picture we would make—a 35 year old woman with no visible ailments – being pushed in a wheelchair by a 90-year-old. We both got a giggle out of that and even thought if someone did see us they would think they were on Candid Camera.

So many of us who live with chronic pain have learned how to get around our limitations. We shop online to avoid having to walk through the store. We wear slip-ons instead of sneakers so that we don’t have to tie our shoes. We use the electric cart at the grocery store when we need to. And, yes, sometimes we ask for help.

To our caregivers and loved ones, thank you! We love you for caring and wanting to help—sometimes we need it and sometimes not. Just remember that while we might not be as strong and independent as we once were – we’re still us. We’re still the same people you knew before. In the wise words of Maggie’s mom, focus on the joy and forget what the house looks like.