Today I’m going to let you in on a
little HUGE part of my life that I usually try to keep under wraps. I am living with chronic illness. A few chronic illnesses, actually. The four with the biggest impact on my day-to-day life are fibromyalgia, interstitial cystitis (IC), complex regional pain syndrome (CRPS), and pelvic congestion syndrome. These are my heaviest hitters because they sap every ounce of my energy. Oh, yeah – and they HURT.
I’ve lived with some of these illnesses, and the chronic pain and fatigue that come with them, since I was twelve years old (that’s 16 years, in case you were wondering… You weren’t? Oops! My bad…) It can be miserable. Some days are completely unbearable. But the support of friends and family is priceless. During a flare, the right words can be the difference between breaking down and feeling hopeful.
Figuring out the right thing to say to someone with chronic pain can be… challenging, to put it lightly. You want to make it better, to take some of the pain, to truly show you care. But sometimes, everything you want to say comes out wrong. Then there are times when the person is in SO. MUCH. PAIN. that even your most genuine and selfless words can be misconstrued.
Here are the three things I need to hear most when my chronic pain is winning the day.
*** and to which I almost NEVER snap in response. ***
1. I believe your pain is real.
For many of us living with chronic pain, the cause is invisible. No one can see what hurts us, so some people don’t believe we hurt at all. They call us lazy, unmotivated, even bad parents. After a while, that gets in our heads until we start to assume that no one believes us at all. In the worst cases, we might even start to believe that we are just all the things they call us.
There have been times in my life when my own parents didn’t understand my pain level. Nothing makes me feel more alone than being told I’m not really hurting. Even worse? Someone telling me that my pain is less than theirs for some reason. When you live with chronic pain, over time, your pain threshold has to rise. And since you get used to people not believing in your pain, you start to only let people know you hurt when it’s almost unbearable. So, when a chronically ill person tells you they are hurting, the appropriate response is NEVER, “Yeah, me too.”
The most reassuring thing to hear on the bad days – the days when I can barely move from the couch, and am letting my little one watch way too much TV – is, “I know how much you hurt.” Do I expect everyone to truly UNDERSTAND the amount of pain I’m in? Of course not, and I pray that none of you ever has to feel it. But know that when I say I hurt, I mean it.
2. I’m here to help you during a flare – for real!
Most chronic illnesses come with ups and downs – meaning we have good days where we can appear perfectly healthy to the untrained eye. But the bad days can be like the aftermath of a train wreck. Imagine every limb feeling leaden and achy, running a fever for no reason, feeling like you have a sunburn on most of your body, and being so completely bone-tired that your body trembles every time you try to move. These barely scratch the surface of all the symptoms associated with chronic illness flares.
Flare days are the days when nothing gets done. If we actually DO accomplish something, odds are we made our flare hurt worse or last longer in the process. Laundry? Not gonna happen. Cooking? We’re lucky if we can scrape together a PB&J for the kid before we pass out. Walking the dog, making the bed, checking the mail, even brushing our own hair can be too much during a flare.
The best thing you can offer your flare-stricken friend is HELP.
Instead of asking what they have accomplished, ask what you can do for them. You can make a HUGE impact on their recovery time and their outlook on life by simply tossing their laundry in with yours, grabbing the mail, making them a snack or a cup of tea, or playing a game with the kids so they can rest.
3. I won’t judge you for making your health a priority.
Many of us have experienced judgement because of our chronic illnesses. A well-meaning relative asking if you REALLY fed your child another PB&J. Your friends asking if you’re REALLY in pain, or just on a Netflix binge. Maybe even your spouse asking if you REALLY couldn’t wash a single load of clothes. But often, what hurts the most isn’t judgement from basic tasks we can’t complete, but from not being able to fully participate with family and friends.
I can’t count how many times I’ve had to cancel plans at the last minute because my pain level was just too high for me to function. And you know those weekends when you’re invited to what seems like dozens of events? We usually can’t do those. So we have to carefully choose which ones we’ll make it to, and try to turn down the rest without upsetting anyone.
But no matter how delicately we try to balance everything, sometimes it just doesn’t work. We get struck by a flare unexpectedly, or the first event we agreed to leaves us too drained for the second. Either way, judgement ensues. We come across as “flaky” and those same people who don’t believe our pain or exhaustion is real decide we’re not worth the effort. The invitations stop coming and we get left to ourselves – which, to be fair, is what people assume we wanted in the first place.
So please, PLEASE tell your chronically ill loved one you won’t judge them for not being able to join in every adventure. Understand that they hate missing out – it breaks their heart every time – but they HAVE to take care of themselves differently than you. They HAVE to be careful with what they do. Remember that they love you, and they need you. The days when they are able to get out and play may seem far apart and too sporadic for you, but for them those days are the lifeline they need to get through the bad ones.
Don’t write them off.
Be their light.