Being a caregiver for someone who suffers from chronic pain is not an easy role. Both the person in pain and the caregiver can get frustrated trying to understand one another.
Most likely, a caregiver is a loved one, so maintaining that relationship is extremely important, and the person in pain might not always be honest about what they need. However, caregivers need and want honesty from their pain sufferers so they can give the best care possible.
We asked the Reddit community of /r/chronicpain the “Do’s and Don’ts” for caring with someone with chronic pain to get input from real pain sufferers. Keep in mind that these comments are very honest, but overall, these Reddit users wanted to make sure caregivers know how much they are appreciated and loved!
Someone who suffers with chronic pain may fear physical activity because of pain. Though some patients have strict activity limitations, many pain sufferers should participate in physical activity to promote healing. One Reddit user suggests: “Challenge us gently to do things that we could do, but won’t do. For example, I can actually do light workout sessions, but didn’t for the longest time because why would I when I’m just gonna hurt again later?”
Caregivers should be present during physician visits and ask questions about limitations and physical needs. It is important for the caregiver to be knowledgeable so that the activities they are encouraging the person in pain to do are appropriate. Positive encouragement doesn’t have to come through words either. One way to encourage the person in pain is to find an activity that can be done together. For example, try a beginner’s yoga class or even just a light walk in the park.
A lot of people in pain can still move about the day just fine but may just be more irritable, or seem grumpy. The request for patience is a common thread in the answers we received. One Reddit user said, “I am unable to do more than one thing at a time when I am in pain. This means if you ask me a question whilst I am trying to do something else, I am likely to snap at you which then upsets both of us and helps no one. So maybe be patient and only ask or give one thing to do at a time.” A tip to help you be patient: make lists. This way when the person in pain is finished with a task, they can move on to the next without being “told what to do.” This will also allow them to be independent.
Another thing to be patient about is improvement. Just because a pain sufferer was able to do something the day before, doesn’t mean they can do it again today. Be patient with progress and be their cheerleader when needed.
Although doctors have their patient’s best interests in mind, supporting the person in pain during doctor’s appointments is extremely important. Caregivers are around pain suffers more than anyone else, so they have some of the best insight on a day to day basis. It is not uncommon for patients to downplay their symptoms or abilities to avoid new treatments, or in some cases, doctors may not believe the symptoms are genuine. Helping them communicate their pain and being their advocate can help them get the best care possible. Not only will they receive better care, but they will also feel like someone is on their team.
Another way to be an advocate is to help the person in pain keep a Pain Diary to bring to doctor’s visits. You can download a free Pain Diary by signing up for our email newsletter.
Pain can be debilitating physically, but that doesn’t mean pain suffers don’t want to support their caregivers as much as possible. One Reddit user said: “Do tell me about you, your ups and downs and what is happening in life. Just because you think I may have things tougher at the moment doesn’t mean I don’t want to share your struggles & help if I can.” Just like any friendship, sharing what’s going on your life is an important part of maintaining the relationship. Sometimes it may feel like all you discuss is their pain, so a conversation about what’s going on with your life might be more refreshing and healing than anything else.
Unfortunately, some pain may not ever improve, so promising progress can actually be discouraging. Most likely caregivers say “it will get better” as encouragement, but can actually cause hopelessness if conditions won’t ever improve. Also, saying, “it could be worse” is not encouraging either. Keep in mind that problems are relative. Just because other people have problems that may seem worse than what the person in pain is going through, the reality to that person is that their pain is debilitating. Saying “It could be worse” to the patient could have the opposite effect of what you want.
Though many pain sufferers do need consistent care, it is important to allow them to do things on their own if they desire to. Few things are worse than feeling helpless. One Reddit user mentions, “If I say I can do something myself or I am ok please do not jump in and still do it for me or take something off me. We need our independence still.”
As a care giver, it is important to find things that the person in pain can do on their own, and allow them to do it. If the person likes to garden but can’t anymore because of their pain, having them plant a pot and care for it may be a better alternative. Finding those activities will restore a since of independence and reduce the feeling of helplessness.
Caretakers and pain sufferers should strive to communicate consistently about the best way to support each other. Chronic pain doesn’t just affect the one diagnosed with it, so caretakers and sufferers alike should listen to each other’s needs and show love and patience from both parties. For more helpful tips, subscribe to our newsletter.