How to Communicate Better About Your Chronic Pain/Fibromyalgia & Set Healthy Boundaries?

How to Communicate Better About Your Chronic Pain/Fibromyalgia & Set Healthy Boundaries?

I hope the tips here can help you to feel more comfortable and confident communicating about your pain, and setting boundaries with others, so that you can focus on taking care of your health. Explaining pain in words is like trying to translate a word from one language into another, except that there is no equivalent word in the other language with the same meaning.

Chronic pain presents significant communication challenges for our relationships, such as needing to constantly cancel plans or having to ask for help. After all, relationships can be tricky enough without the additional complexities of living with chronic pain!

Communicating With Your Doctor About Your Pain

Doctors often attempt to simplify the problem of describing pain by asking patients to rate their pain on a number scale out of ten. Personally, I find this frustrating because one number cannot capture the whole picture of what my pain feels like. When I researched this topic I found a great tool, called the LOCATES scale (Health), for overcoming this challenge. It provides a framework for explaining all the dimensions of chronic pain:

L: Location of the pain and whether it travels to other body parts.
O: Other associated symptoms such as nausea, numbness, or weakness.
C: Character of the pain, whether it’s throbbing, sharp, dull, or burning.
A: Aggravating and alleviating factors. What makes the pain better or worse?
T: Timing of the pain, how long it lasts, is it constant or intermittent?
E: Environment where the pain occurs, for example, while working or at home.
S: Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

Try writing out your answers to each corresponding letter before your next appointment and share them with your doctor. I hope it helps you feel like you’ve communicated all of the dimensions of your pain!

Communicating With Your Loved Ones About Your Pain

When it comes to friends and family members, pain is a thorny subject. Chronic pain causes stress and heightened emotions. It’s completely natural to snap or get upset during a difficult conversation when you’re in pain. Sometimes just letting your loved ones know how you’re doing that day can help them adapt accordingly. You can try to use the LOCATES scale with your family members to help them understand more fully what you are experiencing.

The Chronic Pain Couple recommends “logging your daily pain levels in a pain app, [then] screenshot and text the daily summary to your partner before they get home from work…This will help your partner understand what your physical capacity is so that they can adjust their expectations of you accordingly.”

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Sometimes family members or friends may doubt that your chronic pain is real, criticize how you handle your pain or even accuse you of being lazy if you have to cancel plans because of pain. Even the most supportive people can sometimes be insensitive or say the wrong thing.

 I’ve found that knowing how I want to handle different communication challenges associated with chronic pain ahead of time is helpful to improving my communication with the important people my life.

De-escalate Tension to Express Yourself  Clearly

Feeling like you aren’t being heard or that you are being judged when you communicate about your pain is frustrating. On top of that, it’s difficult to express yourself clearly when you are hurting and feel emotionally reactive or defensive.

 One way to de-escalate tension and have a more productive conversation is to take a pause before responding to an upsetting comment. The first step is to notice that you feel angry, hurt or upset. If identifying the feeling is tricky, look for physical cues of emotional reactivity – clenched jaw, stomach knot, tight chest, constricted throat or increased heart rate. Then intentionally take a pause until you feel ready to respond from a place of self-awareness. This could be as short as counting to 10 or as long as waiting until your pain flare has passed to continue the conversation. Sometimes I find going into another room and taking a short mindful meditation break (focusing on my breath for three minutes) really helpful.

Dealing With Unwanted Advice

In my experience there are two types of advice: well-meaning suggestions from someone who genuinely wants to help and judgmental statements framed as “advice.” In responding to the former, I like the advice from Live Plan Be: “The key is to find ways to respond to others that don’t drain you or get you riled up… You can give them a positive response without agreeing or committing to follow their advice.” An example might be “Sure, I’ll keep that in mind.”

Dealing with judgment in the form of advice (“maybe if you got off the couch and exercised more then you would feel better”) is another story altogether. Rather than feeling the need to explain yourself, and going around in circles, it’s best just to be direct and say politely that you aren’t interested in their advice: “When it comes to my health, it’s important to me that I do what I think is right. When you tell me what you think I should do, it’s not helpful to me. It would mean a lot if you would not do that anymore.”

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Establishing Boundaries And Sticking To Them

Setting healthy boundaries is good for everyone, but it’s particularly important for people with chronic pain. The reality is that we face physical limitations, and pushing them has severe consequences in the form of pain and fatigue. It can be hard for the people around us to accept these limitations and to not take them personally. These limitations can put a strain on our partners and families, whose lives are also changed by our chronic conditions. The urge to avoid disappointing people is hard to resist and learning to put your health needs first is a difficult transition for many of us. But speaking up is important for your health and well-being! There are many positive personal benefits that result from learning to advocate for yourself, like greater self-confidence and agency, feeling more centered, and feeling that you are living with greater authenticity.

If possible, try to make a request to set a new boundary in a constructive way. Ask in a calm but firm manner, at a time when the other person is more likely to be receptive. When you clarify a new position in a relationship, speak in terms of “I” rather than “you” to minimize defensiveness on the part of the other person. It’s important you also stick to the boundary you have set, otherwise it’s unlikely the other person will too. Live Plan Be suggests a helpful tool for setting boundaries called the ‘Feedback Formula’:

When you … call me at 11pm at night (describe the person’s behaviour),

I feel… upset and frustrated (describe the emotion you feel), 

and the result is…my sleep is interrupted, and it that increases my pain (describe the effect of you experiencing that emotion). 

Would you be… willing to call me before 8pm instead?” (make your request).

In this example, after setting the boundary, don’t answer the phone after 11 pm, in order to reinforce the line you have drawn.

Ultimately, there’s no way to express yourself perfectly in every situation, and you aren’t to blame if other people can’t or won’t listen. If someone protests the boundaries you have set, try to remember that it’s their problem, not yours. It’s just further proof that the boundary line is needed. Focus on nurturing your healthy relationships, and put toxic relationships on the backburner. “Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with chronic pain” (My Chronic Pain Team).

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Hopefully these tips can help you communicate more clearly about your pain, and establish boundaries with others, so that you can prioritize your self-care.  

References:

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