Disclosing Your Chronic Pain: Here’s How to Get Started

One of the milestones of living with a chronic condition and on a chronic pain journey is learning how to disclose your condition to friends, family members, potential romantic partners, and other people in your life that you want or need to know.    

In a way, disclosing your chronic pain is an endless series of milestones, because each disclosure is its own unique experience.  Because of that, it’s hard not to get caught up in asking yourself questions like: How will they react?  Will they be supportive?  Try to micromanage my life?  Reject me?  

Some of the people you disclose will take the news in stride, as you expected them to.  Others won’t, as you may have expected.  And some may surprise you, for better or worse.   Talk about uncertainty!  

A lot to think about, right?  Here are some ideas to help you get started:  

Take a “need to know” approach. 

Decide ahead of time what you want to tell your friend or family member about your chronic condition.  And how much beyond the diagnosis you want to disclose to that person.  Most likely, you will feel comfortable giving some people in your life more specific information, e.g. your medication regimen and any limitations you experience, than others.  Ask yourself: What do I need for them to know?  What do we not need to discuss?  You’re in control here.  

Decide when the time and place is right.  

Choose a time when the two of you can have some quiet time together.  Think about the setting that will be comfortable for you as well as the other person.  At your home?  In a public setting?  It’s up to you.    

Be clear about your intentions. 

Are you looking for support?  A deeper relationship?  Is this a person you want to potentially date?  This can be as simple as: “I wanted to tell you something about myself.  The reason I want to tell you is _____________.”   This will help the person you are disclosing to understand what you are expecting – and not expecting – from them.  And hopefully help them to listen with an open mind.  

State the facts. 

Once you use the word “chronic,” the other person may have trouble hearing what else you have to say, at least when you first tell them.  You might want to start out with a simple disclosure along with a brief overview of how you’re doing and – equally important – what you’re doing.  “I just learned that I have a chronic condition” or “I am living with chronic pain.”  Followed by: “I am taking really good care of myself, physically and emotionally.  And an important part of taking care of myself is disclosing my condition to people I care about and trust.”  

Be sensitive to how the other person is reacting. 

If you sense they are uncomfortable with this conversation – and looking for an exit – that’s a sign they may not want to go any further.  Respond with: “It looks like you aren’t comfortable talking about this.”  And then wait for them to let you know whether they can have this discussion.  It may take some time for them to process the news and so this may be an ongoing discussion.  

Offer to answer questions. 

Say something like: “Thanks for listening.  Do you have any questions you want to ask?”  Keep in mind that you don’t have to answer any questions you aren’t comfortable with, or that you don’t think are relevant.  It’s as simple as saying, “I’m not ready to talk about that” or “I am not sure how to answer.”  

Educate!  

You may want to provide some information to the person you disclose to.  This might be a pamphlet or a link to a website they might benefit from.  You’ll get an idea of how educated they are by how they respond to your news.  

Don’t assume you have to defend yourself.  

Again, you’re in control of the message here.  You don’t have to apologize or make excuses for your condition.  Keep the conversation focused on moving forward in your relationship.  Respond with judgmental reactions with: “I’m all about the present and the future, not the past.  I would like to count on you to be there for me!”   End of story.    

Be ready to offer support.  Within limits. 

Most likely, some of the people you disclose to are going to use terms like “just feel terrible” or even “devastated.”  That can be your cue to remind them that you’re taking responsibility for managing your chronic pain.  You can be supportive without being pulled into someone else’s out of control emotions.  Be gentle but firm.  They’re feeling helpless.  You’re not.  For more resources on support groups reference our event page.

And keep your expectations realistic. 

Sure, it’s disappointing if someone you feel close to isn’t able to have this conversation with you, is judgmental, or otherwise unsupportive.  But here’s where you aren’t calling all the shots.  You don’t have control over how someone else chooses to think, feel or behave.  And for those who won’t deal, it’s their limitation, not yours.