Why do we want to know this?
We have noticed that chronic pain can limit even your most simple day-to-day activities.
It’s frustrating, embarrassing, disheartening, and even isolating.
But guess what? If you have these feelings, you are definitely not alone.
We searched social media for people who live with chronic pain.
Their pain has restrained them from doing at least one thing that others may take for granted.
They were courageous enough to share their answer with us.
1. “I wish I could cook and wash my own dishes on a regular basis.”
–Charis Hill, living with pain from ankylosing spondylitis. Charis blogs about her journey with chronic pain and a variety of other topics.
2. “My answer is pretty simple. I’d love to be able to walk. Just go for a simple walk like I used to. I imagine lots of things I’d like to do, like kayaking or zip lining or skiing but if there’s one thing it’s a simple walk with no pain.”
–Ciara Chapman, living with chronic pain. Ciara is the owner of My Chronic Pain Diary which is an illustrated diary of her journey through chronic pain.
3. “Today, I wish that I could play with my daughter, but I can’t because I’m in too much pain. I also wish I could still take long road trips, dance, or take part in activities without paying dearly for it later.”
–Saidee Wynn, living with POTS, EDS, PTSD, among other chronic conditions. Saidee is the owner of the Spoonie Warrior Facebook page which serves to support those suffering from chronic pain and illness. FYI, a ‘spoonie’ is a term used to describe someone with a chronic illness.
4. “The one thing I wish I could do is to plan ahead. I have to live day by day, and when I do make plans, at times I have to end up canceling and a lot of the times those plans are play dates for both my kids.”
Denice Gomez, living with pain from endometriosis. Denice has a YouTube channel where she blogs about living with endometriosis as well as makeup and life in general.
5. “Honestly, I almost hate this question because admitting that I alter my life because of my pain is something I’m actively trying to overcome.
That said, I wish I could bend over and wash my face without pain shooting through my body. I wish I could be spontaneous without having to plan out social events, day trips, or vacations to finite details to ensure I’m not going to be in so much pain I can’t go. I wish I could go bowling with my family or play board games all day. I wish that my life never fell apart. I wish I could have children. I wish I could sneeze without pain ripping through my body.
The fact is, there are too many wishes that I wouldn’t even be able to narrow it down to three for the genie in the lamp. I wish, I wish this never happened to me.”
–Adina Mayo, living with pain from arachnoiditis. Adina blogs about fighting pain with a healthy lifestyle while inspiring others.
6. “I wish that I could be a runner. I have never really been able to run and after a knee replacement, it is unlikely that I ever really will. Someday I’d love to even just jog a 5K but even that seems challenging and unrealistic. Other than that, I would also just love the peace of mind that healthy people get too often have — the luxury of not really ever having to think about or worry about pain or illness!”
–Ashley Boynes-Shuck, living with pain from rheumatoid arthritis and other chronic illnesses. Ashley is a published author, certified health coach, and health advocate.
7. “I wish that I could be a normal, everyday housewife and companion to my husband, instead of my being so dependent on him. There are so many other things I could wish for, but there’s no point – I don’t believe in miracles and I accept reality!”
-Frances Heneghan, living with chronic neuropathic pain.
8. “One of the biggest issues that our 14-year-old deals with regarding chronic pain is the isolation due to her Ehlers Danlos Syndrome.
Our daughter has missed years of her life. She has lost valuable time unable to attend school over the past eleven years. She spent three years in bed due to her illness. In the last two years, she has become homebound. We have attempted our very best at making an effort to connect her with children her own age. Using educational events, pediatric pain camps, Big Sister programming and limited time at school. We have successfully helped break some of the isolation. Unfortunately, when you step outside the natural flow of life, there’s a disconnection that is made.
Read the rest of her answer here.
-Ellen, living with pain from Ehlers Danlos Syndrome among other chronic conditions. Ellen and her family host a Facebook page that chronicles Ellen’s daily struggles with chronic illness ‘Empowering Ellen.’
9. “I primarily wish I could get back to work. Currently, I’m unable to do so as I’m living with a lot of pain spikes which are hitting 8 or 9 out of 10 at times. I never know when this will happen and can’t provide enough certainty that I can show up for my shift. I also have difficulty caring, shopping, and cooking for myself regularly but am lucky to have the support of family.”
-Gwen Kennedy, living with pain from fibromyalgia. Gwen runs a number of Facebook groups such as Let’s Create & Share – Creative community for people living with chronic pain.
10. “To be honest, I can do most things still as I have had a few surgeries to help, but the biggest thing I wish I could do when the pain is bad is sleep and stay focused on other things other than the pain.”
-Ian Murray, living with chronic back pain
Wow, a lot of emotion there.
If you have chronic pain then you know, it’s often just about wanting to be able to live a normal life. Being able to work, take care of the house, and play with your kids are things that should never be taken for granted.
If you know someone with chronic pain who can’t work due to their disability, don’t tell them how lucky they are. Chances are that they would love to be able to go to work. And they’re probably dealing with a slew of complex issues.
Try This
This is a good opportunity to think about what we have to be grateful for in our lives. Even if it’s the smallest thing, like being able to walk the dog outside. Practicing gratitude and mindfulness can even have a positive impact on your pain and overall wellbeing.
Thank you to those who shared their stories for this article. You are incredibly brave.
