Suggestions for people who want to help someone living with chronic pain
CHRONIC PAIN,  FEATURES

How To Be A Friend To Someone Living With Chronic Pain

I’m often asked how friends can support me or other patients living with chronic pain or chronic illness. This article introduces ways that you can help people like me.

How to Help Someone Living with Chronic Pain

If you know someone who is living with chronic pain, like most people the instinct to help is almost always there.

After many years of living with chronic pain and being chronically ill, I’ve learned that most people aren’t sure how to help. Sometimes a general offer of ‘Let me know what I can do’ might not seem like enough. But there are many ways to show you care or things that you can keep in mind to help.

Here are some ideas to help friends that are chronically ill or friends that are living with chronic pain.

Offer to visit. Just because your friend can’t get to you doesn’t mean she doesn’t want company. Don’t be offended if she says no.

Some people, especially me, don’t want others to witness their pain. I often say no to visitors. My home is the one place I don’t have to work at putting a smile on my face when I’m in pain.

Ask your friend if a visit might help. Don’t be offended if she says no. It’s not personal.

Often a quick stop in to drop something off is appreciated. For example, my neighbors send me fruit regularly. They never stay long, but I’m always grateful that they think of me.

Don’t tell your friend that you know how it feels to be living in chronic pain. Suffering from the flu, having a broken leg, or dealing with a bad back don’t compare to what your friend is going through. In fact, your friend might be feeling like she has all three.

One thing is for sure: You cannot imagine what it is like living with chronic pain. Don’t try to relate. Offer to listen.

If you don’t understand your friend’s condition, ask her questions. She would rather tell you than have you ‘think’ you know what’s going on.

Don’t wait to be asked for help. If you want to help, just do it.

Drop by with some food and make it quick if you’ve dropped by unexpectedly.

You can also offer to help change the bed or clean up if your friend feels comfortable with this. If she doesn’t, don’t take it personally. I promise that she’ll appreciate your offer.

Offer to take her to the hospital and sit at appointments with her.

You’d be surprised how many of us go to appointments alone.

If you do decide to do this, don’t talk at the appointment. Just be there for support. Let your friend, the expert, talk to her specialist about what is happening. It’s not your place to offer your thoughts or viewpoints about your friend’s health.

I have found it helpful to have friends come with me and jot down notes. Sometimes they catch things that I don’t.

Don’t stop inviting your friend to events you think she might enjoy because you think s/he might be offended by your invites.

Do put some thought into which events you’re inviting her to. Keep those invites coming.

Don’t use your friend to plump up your online dance party guest list, for example. This is an invite you can stop sending if your friend is in pain or mobility compromised. It’s insensitive.

Don’t tell your friend that she doesn’t look sick or in pain. Nothing invalidates us more than having someone tell us we look great when we feel like we’re dying.

I guarantee you, I never feel great. Never. And it bothers me to hear people say I look terrific. My response to this is always a silly joke about ‘Sick chic’, but it bothers me. Try not to mention your friend’s appearance.

Don’t let your friend know that you feel uncomfortable around her.

No one likes being around sick people. Your friend is already aware of this.

We’re all aware that it’s exhausting for people to hear about us being sick all the time. It’s also exhausting for us to be in pain all the time and then have to make YOU feel better because you’re tired of listening to it.

A few years ago, I got a message from someone saying that they’d stopped asking me or checking in because ‘I broadcast my pain 24/7 and that’s all they ever see.’

That’s simply not true. Anyone who is following me knows that I do post regularly for awareness, but I am a multi-faceted person, just like anyone else. I post plenty of other funny things to keep my timeline informative and light-hearted.

Additionally, I’d like to point out that you simply cannot know a person by what they post on social media.

This brings me to my next point…

Don’t make assumptions about your friend’s health or how she is living with chronic pain. It’s ok to talk to your friend if you are in pain!

I often hear things like, ‘I don’t want to bother you because you’re going through so much.’ Or, ‘My pain doesn’t compare to yours.

Pain is pain, my friends. The best person you can talk to is someone who gets it.

Talking about your pain helps emotionally and physically. It’s a coping technique for all patients, including patients who have acute pain from an injury or surgery.

If you’re taking medications for short-term, acute pain, don’t broadcast ‘the evils’ of taking medications. Don’t med shame!

There is NOTHING wrong with patients who need medications to control their pain. We are not addicts. We are in pain. Taking medications helps us to function in our day to day lives.

An example of this was a friend who mentioned he was getting ‘super high’ from his pain meds. I have no doubt that he felt sick from his meds after surgery. Medications can take some time to get used to.

But what a lot of people don’t understand is that PAIN ALSO CAUSES THE SAME SIDE EFFECTS that medication can cause.

Think about when you have the flu. You can feel dizzy and nauseous and totally out of it just with a common virus or from pain. Those are the same side effects you’ll have with pain meds. Try not to shame other patients who need these meds daily. It’s cruel and unnecessary.

We have enough problems with the opioid crisis and patients not being treated for chronic pain. Don’t add to that problem if you don’t understand the nature of pain.

Show your friend that you support her by learning about her disease.

In all the years that I’ve been sick, I’ve had a few friends mention that they took the time to look up what I have. That meant the world to me.

Slow down and walk at your friend’s pace. If she can’t walk, offer to push her wheelchair or assist her as needed.

I still have to tell my husband and friends to slow down! If you’re in a rush, I’m not the best person to be with.

Don’t touch a person living with chronic pain or chronic illness.

Ask first. Many patients like myself who live with diseases like fibromyalgia often suffer from allodynia. This is a painful response to something that shouldn’t cause pain. A light brush on the sleeve, for some people, can feel like a blowtorch.

I’ve also noticed that when people drink or when they are upset, they get very touchy-feely or they like to illustrate their talking points by grabbing you or giving a light smack on the back. Please don’t do this. You don’t need to touch someone to make a point.

Don’t support businesses or venues that are not accessible! Especially if your friend has told you that she has had problems with a venue.

Would you visit a place of business that is racist? No.

Time and time again, I see friends going back to places of business that are not accessible or that are known for their lack of compassion in treating disabled patients.

I know who you are, and I notice when you do it. If you want me to support your causes (and I always do!), I expect you to support mine.

Believe me, if I see someone being abused, you can bet that I will be loud and angry about it. We need you to tape this stuff or say something when it happens.

Hold businesses and venues accountable if they are not accessible or if they discriminate towards disabled people.

Always encourage. Never discourage. Offering unsolicited advice is something that none of us enjoy.

Offer to listen. Don’t offer other ideas for patients to try. Remember that most of us have been living with chronic pain for years and we’ve tried everything. If you’re not an expert, resist the urge to offer advice.

Listening is the absolute best thing you can do. Most of us need an outlet where we can channel that fear and pain when we’re hurting. Being someone that a patient can talk to safely about pain is the best thing you can do for a patient.

Another key point to keep in mind for people that are living in chronic pain is that we need encouragement. It helps us to stand up for ourselves and continue to advocate for awareness.

Do you have any suggestions that you’d add to this list? I’d love to hear from you!

Ways to Help a Friend Living with Chronic Pain
Ideas for how you can help a friend who is in chronic pain
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I'm a chronically ill Canadian who has been living in Taiwan since 2006. I'm a bit of a jack of all trades! I love art, gardening, flower arranging, reading (that's an understatement if you've seen my GoodReads profile), and snuggling with my cats. Animal videos make me cry. I hate cooking. Nothing makes me happier than seeing my garden bloom! Learning about new cultures and exploring the world has been my thing since I started traveling at age 19. A self-professed autodidact, I can speak comfortably on many different subjects and hold a special place in my heart for science, technology, law, health and medicine, and history. You can find me nerding out at home most of the time due to being chronically ill and housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites. Check my About page under Carrie Kellenberger to learn why I'm taking you on this journey with me through My Several Worlds. I can't wait to get to know you better!

12 Comments

  • Claire

    Great tips! Especially about offering help around medical appointments. Sometimes I like to go alone, but other times it would be nice to have company and then perhaps go for a coffee or something after to have some time that isn’t focused on medical care too.

    • vivita

      I think I do 99% of the above but it’s great you are letting people know what works and what doesn’t .
      I just wish I could be the one to push you (although I think you’d decline the offer ) . Great read CK

  • Katie Clark

    I so appreciate this post and the graphic with the list. You’ve explained things in very real terms. Not many want to just come over and hang if I’m not feeling the greatest. Makes me sad. I used to be the gathering planner; now that I’m not, I don’t get many who connect just because. I’ve resigned myself. I probably wouldn’t have the energy to support the # of “friends” I used to have any how.

    • Carrie Kellenberger

      Thank you, Katie! I have loads of friends that want to visit. They’ve known me for over a decade and have seen the toll this has taken on me. But honestly, it’s so hard even sitting up and talking for more than a few hours these days.

      Like you, I was a huge event coordinator. My business is built on it and then my work with the Canadian Chamber of Commerce in Taiwan required event planning on a huge scale for six years. I was directly organizing our Canada Day festival for 8,000+ people here every year, several charity gala events to raise money for sick kids at a local hospital here, small business events, a new event called Dragons’ Chamber that has done really well and is meant to help entrepreneurs hone their business pitches and get a chance to deliver their pitch to a live audience with prize money up for grabs, holiday events, and All Chamber events. Plus I had my awareness events going! That all came to a screeching halt in 2018 when I got too sick to do it. Every year leading up to 2018, I was able to do less and less in person. I often found myself organizing a lot of events and then not even being able to attend. Plus the demand of being able to leave my house – in 2015, I was able to do that 3 or 4 times a week. By 2018, it was down to once a week and now I’m done to once or twice a month. Things have really changed and it has been traumatic, but my friends have stayed with me. (Most of them) I love that they remember to take a video for me or send me silly things.

      A friend offered to call me from the Gay PRIDE Parade last October. It’s the biggest PRIDE parade in Asia. The fact that he was willing to do that while he was performing on a float during the parade – my heart just about burst with love. That’s when you know you have true friends! xoxo (I also like appreciate friends who leave voice messages and was so happy to hear your message this week.)

  • Shruti Chopra

    Carrie… I love these two because it’s two points I hardly see people mention yet following these two things quietly respects your friend – 1.”Slow down and walk at your friend’s pace.” & 2.”Don’t support businesses or venues that are not accessible! ”

    Thankfully I have friends and family who walk at my pace. I have experienced some people I know that didn’t and the times it happened made me feel sad. I didn’t realise that something like that would impact me but it did.

    I keep speaking about accessibility and whenever I’m to go out with family or friends, we choose the most accessible place so that it doesn’t strain me and everyone is supportive of that. And now many people I know are more conscious of even the commercial spaces they rent out needing to have accessibility.

    I will forward this to a few people I know who still need to read something like this! 🙂

    • Carrie Kellenberger

      Hi Shruti,

      It’s tiny things like this that can make all the difference in the world, isn’t it? Some of my friends remember, but I almost always have to ask them to slow down a bit. (I’m getting slower every year.)

      As for supporting businesses that are not accessible or that have made things difficult for their disabled guests, it’s a huge thing. It’s massive! Sadly I’ve found that most able bodied people are not willing to give up going to a place they love unless it really affects them personally. Sad, but true. That event last year had a profound and extremely distressing impact on me.

      It’s so important that people understand what it’s like to be treated this way. Most people have zero issues with venues and thus don’t see the obstacles we face daily or see the things that make life hard. (Having enough room in a bathroom, for example, or navigating uneven pavement or tiny steps. Or something as simple as asking for enough room to put both feet flat on the ground so you can support your upper body.) No one will get that until they experience it for themselves.

      My husband is really good at calling ahead as are my friends Jenna and Jaclynn. They absolutely know what I’m going to have issues with ahead of time and have even called and said, ‘Don’t come, it’s too busy’ or ‘There are stairs here that weren’t listed in the google images’. This helps a lot. We definitely have a list of tried and true places that I won’t have any issues at. I’m leaving Trip Advisor reviews now for places that aren’t accessible. It’s an easy button to click or you can upload photos of what might be an issue. I really appreciate when people think to add this information to venue information.

      Thanks for your support as always, Shruti!

  • Sheryl Chan

    Great post, tips and perspectives Carrie! For me personally I don’t mind others telling me I don’t look sick (kind of take it as a compliment lol), neither do I mind going for appointments alone. I kind of feel bad if someone has to sit though it with me haha. But yes the unsolicited advice really grates on my nerves. Thanks for this post. It definitely captures everything many with Chronic Illness feel
    !

  • Julia Walker

    I’ve just discovered your insightful writing, Carrie. Being a person who lives with chronic pain, I greatly appreciate your insight. I had my husband read the article. He was grateful to learn things I can’t tell him and said he would read it periodically as a reminder. He’s a jewel and wants to learn how to help me be more comfortable. The first thing he mentioned was touching me without asking first. It doesn’t seem like much, but it’s major he realizes my pain, acknowledges it, and wants to do what he can to help me. I’m looking forward to reading more of your writing.

    • Carrie Kellenberger

      Hi Julia! I’m so glad you enjoyed this and that is was helpful for your husband too. I know that feeling. I have a few friends that are super touchy feely and I finally had to tell them really directly not to ever touch me unless I say they can. They had no idea about allodynia until I explained it. That is one of the reasons I wrote this article and I’m happy to say it has been shared thousands of times now. Take care!

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