Why It’s Important to Have People Who Validate Your Pain

Janneke Phung avatar

by Janneke Phung |

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“I love you, dud!” I hollered after my 3-year-old son as he blissfully skipped back to play with his brothers. (It’s unfortunate that while I had meant to say, “I love you, bud!” or “I love you, darling!” it had come out as a rather unflattering mixture of the two words. *cringe*)

He had come to me just a few seconds earlier wailing and holding his hand up. Despite his blubbering, I was able to figure out that one of his brothers had bit one of his fingers. I kissed his hand and tried to send him on his way again. But he continued crying and pointed to the exact spot on the finger where he’d gotten hurt. I kissed the exact spot and immediately he ran off, content knowing that his pain had been acknowledged. I marveled at how he was seemingly no longer aware of the hurt that had been inflicted upon him.

Sometimes the best help we can receive is for our pain to be acknowledged.

I wonder how this situation would have developed if I had looked at him callously and said, “Well, why did you let your brother do that?” Or, “Why didn’t you pull your hand away before it could enter your brother’s mouth?” Or, “Well, that was silly of you!” Or, “It probably doesn’t hurt nearly as bad as you’re making it out to be. I don’t see any blood!”

How would he have felt? Would the situation have been resolved? Would the focus have shifted? I’ll bet you he’d be tempted to squeeze the finger until there was blood — trying to convince me that he was really hurt.

The problem with ankylosing spondylitis (AS) is that the pain is often invisible to others.

Has anyone who has no clue about your painful journey ever told you what you are doing wrong in your effort to reduce pain or get a diagnosis? Have you ever felt that your pain was minimized by others simply because you hadn’t been officially diagnosed with your disease? Have you ever feared that your lack of energy comes across as laziness?

Has a healthcare professional ever told you that because of lifestyle choices you’ve made in the past, it’s partially your fault for ending up with the disease you’re facing? Or, equally disheartening, has anyone ever suggested that because your pain is invisible and always shifting to different areas of your body, your issues must be in your head?

My answer to each of those questions is “YES!” I am guessing that many others on this AS journey have faced similar invalidation from both friends and healthcare professionals alike.

Our disease is uncommon. As a result, not many people can relate to the physical pain or emotions that people with AS symptoms face. One day we wonder if we’re a healthy person, and the next we struggle to get out of bed due to pain or fatigue. One day our right sacroiliac joint hurts, and the next it’s our left shoulder. Frankly, others must wonder if we just can’t make up our minds.

My friend, what you need on your journey are people who listen to your concerns, acknowledge your ailment, and validate your pain. It doesn’t matter if these people are family, friends, healthcare professionals, or virtual acquaintances — they will become such an important part of your support system.

It isn’t until you find those people who don’t need to be convinced of your pain that you’ll be able to stop dwelling on your pain and work toward a better way of coping with your disease.


Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.


Lizzie avatar


Great piece of writing. Have you heard of Humira? My son has been on this medication for 11 years and despite being evaluated as in the chronic worst 10% of AS the pain is greatly controlled compared to life before Humira.

Jim Prall avatar

Jim Prall

Janneke is correct to say both "keep on swimming" & to recognize how important it is to have support for understanding her condition. As I probably have had AS for 50 years it was only diagnosed as such after I got on Medicare @ age 65, 11 years ago. And my spouse of 30 years still holds me responsible for my issues as with 5 years of Remicade infusions I do so well, much of the time. I need support for all the time I spend on naps & yoga & meditation. It's good for me to read that this is a problem for others too!
We have a joke that I have only two speeds: high and off. But joking aside keeping going is difficult if I'm just thought to be slacking off half the time.
Thank you @ AS News for creating this space! Thank you Janneke for confronting this issue!
& good luck to all dealing with AS!
I often wonder what I'd be like if I'd understood more at a younger age about autoimmune issues. Certainly "finding" exercise & yoga way back 50 years ago was more than luck it was listening to my own body.


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