How to cope with chronic pain stigma
Written by Gem Ninsuvannakul
Firstly, what is stigma?
As defined by the google dictionary, ‘stigma’ means a mark of disgrace, associated with a particular circumstance, quality of person. In simpler terms, it is when a person is labeled by their illness, and judged negatively as part of a stereotyped group rather than as an individual. If you're suffering from chronic pain, you’ve probably experienced it at some point in your recovery journey, as it has become a persistent and growing problem in chronic pain patients. Often, we are stigmatized for ‘making excuses’ to avoid responsibilities, due to the unpredictability and invisibility of most pain disorders. At the age where society expects you to be healthy and active, chronic pain stigma can have a large toll on us teenager’s mental health, with many reporting loss of social connections and the feeling of being an outcast to society.
Common examples of chronic pain stigma you may have heard before:
Stop overreacting, it can’t be that bad…
You don’t look sick
You're too young to have arthritis!
Why are you always depressed?
Are you going to the doctor again?
It's probably all just in your head
So, what can you do about the stigma?
1) Remember that it's not your fault!
People often stigmatize chronic pain in youth due to the society that has taught us to believe that those in their teenage years should not be in chronic pain. Therefore, there is no reason to take it personally when faced with stigma, as most people generalize youth chronic pain patients, thus, their judgement is based on the stereotype rather than you as an individual. Just remind yourself that it's got nothing to do with you as a person, and that you are just suffering from a natural occurrence that is no fault of your own.
2) Practice the ‘drop it’ attitude
As someone suffering from chronic pain myself, I’ve come to the realization that getting resentful and frustrated over the feeling of being stigmatized gets you nowhere. It is common for these feelings to arise, especially when people’s judgements are driven by misunderstanding of your condition. Luckily, I came across the ‘drop it’ technique, by Tony Bernhard J.D, who is a chronic pain survivor and author of many books focused on coping with chronic pain.
Essentially, this is where you focus on your surrounding sight and sounds, like the sensation of breathing or the color of trees outside your window, in order to draw your attention away from the negative emotions arising from stigma. Yes, I know, this may sound stupid - I too initially thought so as well, but after trying it out, I found that it actually works, and with practicing with technique over time, it has become easier for me to relieve negative emotions when focusing on immediate sensations around you.
3) Try educating family and friends
The society that we grew up in often labels chronic pain as an aberration in human nature, rather than a natural occurrence that can happen regardless of age or physical condition. Most people grew up with that belief, therefore it is important to let the people around you understand the reality of living with chronic pain. I would suggest using a tone which remains neutral and unbiased, and purely describes the unpredictability of your pain/illness, and how it may cause you to cancel plans in short notice, as well as explaining the invisibility of your illness. Although this can be hard, avoid complaining and using an accusatory tone. Remember, we are here to educate them, not pointing fingers and placing blame!
Furthermore, people often stigmatize unintentionally and without meaning harm. If you come across this, just gently correct them and attempt to explain your condition and ask them nicely to not use those terms when talking to chronic pain patients.
4) Cut out toxic people and stick with the real g’s!
Even after attempting to educate them, there’s always going to be people who will not understand that their words cause harm; this is often common amongst the older generation who grew up in a different environment and culture. We can’t change what others think, therefore, consider letting go of these relationships, as their presence and attitude could contribute negatively to your overall mental health and recovery process.
Instead, focus on maintaining relationships with those who have helped support you and stuck by your side despite the troubles. If you haven’t already, let them know that you appreciate their support. A short message can go a long way!
The bottom line…
At the end of the day, there is always going to be stigma surrounding chronic pain in youth. While I am not a medical professional, these are just a few tips that have helped me with my chronic pain journey that I hope you will also find useful. Remember, that you are not alone in your journey, and if you think the stigma gets too overwhelming, consider reaching out to a therapist or medical professional.