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.
A LOT.
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.
We didn’t.
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.
Every bit of this has been thoughts I never made into words ❤️ Thank you!
I’m so glad it spoke to you! Thank you for reading!
I have Crohn’s Disease and know exactly how this is, I agree and really enjoyed this list. thank you for sharing.
Thank you so much, Jackie! I hope this list helps someone.
This one really hit home with me! I don’t have a chronic pain illness, but I do struggle with anxiety and depression which can sometimes manifest itself in similar ways. I feel like so many times people just write me off because I am too into my own head to leave the house! It really shows who your real friends/support system are, and I applaud you for recognizing what does/doesn’t help you! <3
Thank you so much, Jenny! I have also struggled with anxiety and depression, and I almost mentioned them in this post since the effects can be so similar. The reality of living with these kinds of illnesses is so different from what most people think. I hope that this post can help at least one person better understand someone they love.
Living with chronic pain is so tough, and it’s also tough to know the right things to say to people living with it. This list is so helpful, thank you for sharing! And I’m sorry you have to deal with all of that. <3
Thank you, Tami! I’m so glad you found this list helpful! And don’t worry about me – the pain is just making me stronger! 🙂 At least that’s what I tell myself! LoL!
I’m so sorry you go through life in such pain. Thanks for sharing with us the things that we should be saying! I’m going to take it to heart! <3
Thank you, Susannah! I’m honestly lucky that I’ve learned to control my flares, so my pain bad pain days are much farther apart than they used to be. But that’s not the case for so many others with chronic illnesses, and we all appreciate when kind people like you take the initiative to learn about how to make our lives a little brighter.
This is amazing. Thank you for sharing. I have been battling HSP-Vasculitis for almost a year and a half now. I’m an anomaly. It’s a disease mostly for children and even in long-term cases it times out after a year and goes away. My blood vessels burst and I get ulcers on my skin – mine look different than most documented cases. I still relapse regularly and have to cancel on my friends because if I exert too much energy it will only get worse. My friends and family have been great about it but sometimes they either over-coddle me and make me feel like I shouldn’t be living a normal life at all (even on a pain-free day) OR they don’t seem to understand when I tell them I can feel a bad day coming on and that I need to stay home and rest to prevent the pain from coming back. People forget that we have illnesses because they can’t SEE the illness. But I’m not about to start waving my scars in everyone’s faces to prove that I’m sick. This post really spoke to me. I’ll definitely be sharing it. Thank you for being vulnerable and saying what so many of us want to say. You are so strong and I admire you!
xoxo Lauren | Glitter & Grandeur
Lauren, you seriously made me cry. Thank you so much for sharing your sharing your story with me.
My family had the same tendency to coddle me at first, but 16 years into it they have mostly given that up and sometimes I kinda miss it! LoL!
Take care of yourself and remember that even on your worst days, you’re a light in the world! 🙂
I don’t live with chronic pain so this is a very informative post for those of us who may not understand how to respond to someone who does live with it. Thank you for sharing!
Thank you, Cheyenne! I’m so glad you found this helpful!
Thank you so much for sharing this story! It’s so important for people to be informed!
Thank you, Juliette! That really means a lot to me!
Thank you for sharing this, it is a great way to let people know how to better support their loved ones who are experiencing a chronic illness or pain.
You’re so welcome, Emily! I’m glad you found it helpful!
I so needed this today, I live with constant pain and this really hit the mark. Thank you!
I’m so glad this helped you, Lisa! Thank you for reading! <3
I love the authenticity in this. And especially love the last point. Thanks!
Thank you so much! That means the world to me!
Amen girly. I don’t have chronic pain or an illness, but so many of my best friends do, so I so resonate with this. Sharing with them for share with their friends and fam!
Thank you so much, Summer! It’s amazing how common chronic pain and illnesses are, and no one really knows until we start talking about it. Just reading through these comments has helped me realize that I’m not nearly as alone as it seems when I’m stuck on the couch on a flare day!
LOVE this. I have celiac disease and fibromyalgia, and some of the most meaningful things people can do when I’m having a flare up is understand that I’m resting (not being lazy) and spend time with me in ways that I can enjoy at that moment, like with a Netflix binge or just a slow walk around the neighborhood.
YES!!! My husband is a VERY active person, and I love that about him, but after my fibromyalgia started to get worse I had to convert him to a part-time Netflix binger! Honestly, Netflix and slow walks on cool evenings have saved my sanity!
Thank you for this reminder. I have two people in my life living with severe chronic pain (my Dad and my father in law). One of them is vocal about it and the other one suffers in silence, but I know his pain is extreme. As their loved one I wish I could just make the pain go away, but I know how important it is for communicate with them in the right way too. Thanks for the tips.
Yolanda, I’m so glad that this can help you relate to your loved ones. I’ve seen how hard it is on my family to really grasp what I’m going through, and how they struggle against a feeling of helplessness when they aren’t able to just take my pain away. If this post has helped one person who was in their shoes, I’m a very happy camper!
I love this! Thank you for sharing your heart with us!
Thank you so much, Cassidy! I really appreciate your kind words!
I get chronic migraines (3-5 days out of each week) and one of the most validating things is just that people SEE me. I hate complaining about my pain but those close to me have picked up on my behavior changes and know when I’m not feeling the best. Chronic pain is tough because life continues to go on through the pain. Thank you for a great post.
me too, Amanda!
YES!!! Life doesn’t slow down, no matter how much we suffer. I hope you find relief from your chronic migraines – I have a lot of issues, but I’m not confident I could power through that one, so rock on with your bad self!!! Gosh, I’m such a dork… sorry… I’m so glad you were able to relate to this post! Thank you for reading!
This really hits home for me. I’ve been dealing with headaches and dizziness on a long term basis. I’ve had blood tests , as well as an inner ear test, and all came back normal. Some days are good, while others…. the peanut butter sandwich. I look forward to learning more about your journey. Your post has provided perspective and peace. We are functioning while dealing with a sometimes uncooperative body. It proves to me that we still have work to do and love to spread.
Candy, this comment gave me so much inspiration! Thank you so much for your kind words, and I truly hope you find answers and relief. Sometimes, just knowing why something is happening in your body can help you feel more in control of it – it may not lessen your symptoms, but as least for me, it seems to make it easier to cope with. Thank you so much for reading!
I’m a chronic migraine sufferer (I see someone else in the comments is, too!) and this is crucial for me. I don’t need anything except support and understanding – and I need you to BELIEVE that what I’m going through is real, even though it’s an invisible type illness. I went out with friends a few weeks ago and a migraine hit me hard and I just left without saying goodbye. I needed to get out of there and glad I have friends who get it and don’t make me feel guilty about it.
Ali, preach on!!! Not being believed is one of the most difficult struggles for people living with invisible illnesses, and it can be seriously devastating. I’m so happy to hear that you have great friends who understand and support you! Thank you so much for sharing!
This is wonderful. There are so many things people don’t understand about chronic pain. One thing I run into a lot is people over apologizing when I share about the various pain issues I face. It makes me feel super awkward, and as if I was seeking pity. When I share about it, I’m not seeking pity, just a little bit of understanding and to not have to be the only one who knows about it. I find it helpful when others know, not so they can give me attention at all, but so that I’m not alone. Knowledge and awareness is powerful. Thank you for sharing this!
Amanda, I feel the same way! I’m not looking for pity, I just want people to understand that there is a real reason I can’t always do the things a normal 20-something can! I’m glad this spoke to you!