In 2013, I was involved in a car accident that changed my life. Although the damage to my car was surprisingly minor, that 10 seconds would change my life forever.
Prior to the accident, I had never experienced any major health issues. I was happy, newly married, active, and had just started my own business. But the accident would leave me with chronic back pain and sciatica in my right leg that would change my future.
I saw countless doctors, chiropractors and pain specialists, tried physical therapy and yoga, and attempted to lose weight, yet had no relief. Fast forward to early 2016, when I was diagnosed with Multiple Sclerosis, a progressive neurological disease that attacks the myelin, a lipid-rich substance protecting your nerves. The MS has increased my overall pain level, causing constant spasms in my lower extremities. Despite a microdiscectomy on my lower back in 2016, I still deal with varying levels of pain daily.
Life with chronic pain and invisible illness is hard. It changes you and your priorities. Over the last 9 years, I’ve lost and gained many friends. I try to find joy in every day, and I always try to give my friends grace… even when they say things that are actually more harmful than helpful.
Do you have a friend or family member that lives with chronic pain? Here are a few ideas of what NOT to say to them, and how you can support them instead!
1. “But You Look So GOOD!”
Um, thanks? While I know this is meant to be flattering, it usually comes off as dismissive to my pain and health issues. Yes, I’m still in pain. When you’ve been living in pain as long as I have, you learn to smile despite the pain. Yes, sometimes I wear makeup and dress nicely. It IS possible to have an invisible illness AND be a good looking person!
If I take the time to put on makeup and do my hair (I’ve got it down to a 5-minute science), it’s because I enjoy doing it for myself. I do love a compliment that doesn’t imply that my pain isn’t real.
You don’t really know what someone is going through based on their outward appearance. A month prior to my back surgery, I had lost weight because I couldn’t move well enough to cook or make regular meals for myself. Surprisingly, I got tons of compliments on how skinny I looked. “Skinny” because I can’t walk to the kitchen to eat a healthy meal isn’t my idea of a good thing! Try to stick to genuine compliments that don’t relate to health or wellness.
Tip: Instead of saying ‘but you look so good’, say “I’m sorry to hear that you’re having a high pain day. Your outfit is fabulous though!”
2. “It Could Always Be Worse”
Yes, it absolutely could be. But if I trust you enough to confide in you, especially with how much pain I’m feeling, then please trust how grateful I am for all of the wonderful things in my life.
That gratitude doesn’t mean I shouldn’t be honest about how much pain I’m going through. Instead of telling me how it could be worse, please try to support me and simply listen to me.
We all deal with struggles and it’s certainly not a competition. If you genuinely care, please ask if there’s anything you can do to help, instead of dismissing my emotions by telling me how “lucky” I should feel.
3. “Just Wait Until You’re Older!”
While I may feel like I’m 95, I’m actually only 35. Thinking about my pain only getting worse as I age is quite depressing, thanks. This comment usually comes from well-meaning elders I meet in the doctor’s office.
While I think they’re trying to create a sense of camaraderie, it doesn’t work like they’re hoping for. I naturally try to focus on the positive, so if you’re trying to be helpful, please try to stay positive with me as well.
Tip: “I hope tomorrow’s more tolerable for you!” is much kinder.
4. “Have You Tried Yoga?” (or insert any other ‘cure’ here)
Yes, I have tried yoga. Acupuncture. Chiropractic. Surgery. Medication. Positive thinking. Exercise. You name it. If you’d like a list, we can go on for days.
In fact, after my back pain started, I even had doctors telling me that I simply needed to lose weight. While I may have been overweight the day before and the day after my car accident, the only thing that changed was my pain level! I have even lost weight since then, but sadly, my pain has only increased with time.
Please know that I and my highly- trained doctors are doing the best we can to manage my pain. So instead of suggesting something you saw on tv, or that worked for your friend’s neighbor’s aunt, try asking me what helps! I’d be happy to share.
5. “You Clearly Don’t Need That Wheelchair/Walker/Cane”
Yes, I can walk. Most of the time, unassisted. But sometimes I use mobility devices for comfort and to enjoy life more.
I need wheelchair assistance through the airport, but I can get up and go to the bathroom on my own. Please don’t remark on what I do or don’t need. What I truly don’t need is judgment from friends or strangers! Instead, please ask for my opinion before offering to help.
Life with chronic pain and illness is challenging, but having a support system makes a HUGE difference. Please remember to give your friends in chronic pain some grace, trust that they are doing their best, and keep checking in on them. We love and appreciate you for it!
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I often get people who go out of their way to tell me I parked in a handicapped space. I tell them, “I know.” But I’m getting kinda pissy these days. Mind your own business and leave me be. My doctors wouldn’t let me keep renewing it if it wasn’t warranted.