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, especially if I’ve told you about the problems I’ve had with certain venues in Taipei. If you want me to support your causes (and I always do!), I expect you to support mine.
To the folks who still support the place of business that abused me in October 2019:
The owner handled this situation very badly. I was put in danger again because they put me in the same room with the staff that was abusing me. This escalated the issue quickly. I ended up going to the police to report the man who did this to me AND the venue.
The owners, who were once people I considered to be friends, promised to call me back. They did not, despite several people asking why they were refusing to contact me.
Believe me, if I see someone being abused, especially a person who is disabled, 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.
Additionally, I WILL NOT support places of business that discriminate in any way. No one should ever have to go through what I went though last year. Be a good person and help your friend!
Always encourage. Never discourage. Offering unsolicited advice is something that none of us enjoy.
Offer to listen. Don’t offer up 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!