Understanding lupus can be an incredibly difficult task – if you don’t suffer from it. Stating the obvious, right? I would bet money that several of you have felt the sting of those in your close circle that have doubted the severity of your illness, your pain level, and even questioned if your pain is “all in your head.” Not having your thoughts, feelings and pain validated by your loved ones, friends, coworkers and even doctors, can be very isolating and demeaning. Sadly, these feelings often lead to depression, frustration, resentment and guilt.
Recently we posted two articles related to pain that had been circulating the internet and social media. One was on doctors taking women’s pain less seriously than men and the other was on how pain medication is under-prescribed for those suffering with chronic illnesses. And with the recent CDC guidelines being released for updated opioid usage for doctors (highly stressing the use of opioids only for acute pain, not chronic pain), it compelled me to reach out to you, the lupus community, and check in.
So, how much does this bother you? Because, as someone who has lived with chronic pain for the last 25 years, it bothers me. It bothers me greatly, and let me tell you why. I do not appreciate feeling like a drug addict because from time-to-time I take opioids for my lupus symptoms. There, I said it. I have taken (and continue to take) prescription opioids for my migraines, kidney pain, and severe joint pain. I don’t take them daily, but I know many people who do and would not be able to hold a pencil without taking them. Sadly, there is a terrible stigma attached to this. A stigma that perpetuates guilt and shame. A stigma that makes me embarrassed to even write the sentence I wrote above. A stigma that makes me overly apologetic every time I walk into my doctor’s office and say I need help with my pain. And that, my friends, is not okay. But the saddest part is, it’s not just the doctors that invalidate your pain. In fact, sometimes it’s not them at all. Sometimes it’s those closest to you. And just like the best restaurants that surround the parking structure in your neck of the woods, those that you think would validate, regrettably do not.
So let me ask you this….do you?
Do you validate? This sounds strange to ask, as most of you reading this article probably have lupus or another lupus overlap disease. But, just because we seek validation in our own life, for our own pain, doesn’t mean we give it. And as Steven Stosny, Ph.D. puts it in his article for Psychology today (insert), “In its most tragic form, the increasing need for validation from those with decreasing capacity to give it keeps people locked in bad and abusive relationships. The parties feel like they can’t be okay until their partners “get” how bad they feel…” Interesting, right? So, in order for us to live as healthy lives as possible, and feel like we are heard and our pain is justified, we must be active participants in the validation conversation.
Here are some tips to understanding what it truly means to “validate.” This is for your friends, your doctors, your co-workers, and maybe even you as you navigate understanding your pain and someone else’s.
To validate means to demonstrate or support the truth of another person’s thoughts, feelings, pain, sensations, and behaviors as understandable.
4 Tips to Validate Others
TIP 1: Be Present. Listening without distractions, displaying physical touch and eye contact, are just a few ways to be present and make someone feel validated. For example: sitting with someone when they are having his or her Rituxan or dialysis treatment, putting your phone down and having a real conversation.
TIP 2: Reflection. Authentically (and non-judgmentally) summarizing what you have heard the other person say, is a way of reflecting his or her emotions with them. And by reflecting the emotion, you validate. For example: “You were in so much pain you had to lay down and call the doctor? I am so sorry. That sounds awful.”
TIP 3: Mindreading. Mindreading, or guessing what another person might be feeling or thinking before they verbally express it, is a way of validating. For example: “ You just got very quiet, are you feeling okay? Are you in pain?”
TIP 4: History Lesson. When you understand a person’s thoughts and actions based on their history and biology, you validate them. For example: If your best friend is nervous about visiting you in the hospital because she had a traumatic hospital experience the year before, knowing her history can help you understand, validate her emotions, and show empathy. It also negates any resentment that you might feel.
Note: These tips are based on validation principles established by Marsha Linehan, Ph.D. For the full articles see below. https://www.psychologytoday.com/blog/pieces-mind/201204/understanding-validation-way-communicate-acceptance
Validation is the way to communicate understanding and acceptance of pain, suffering and feelings on both sides of a relationship, whatever that relationship may be. We, at Kaleidoscope Fighting Lupus, hope this article has proven helpful as you navigate your journey with lupus, or any other obstacle in your life.
Sources: psychologytoday.com/blog/anger-in-the-age-entitlement/201104/pain-suffering-and-validation, scandinavianjournalpain.com, psychologytoday.com/blog/pieces-mind/201204/understanding-validation-way-communicate-acceptance, cdc.gov/mmwr, theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism, hereandnow.wbur.org/2016/02/16/underprescribing-opioids-for-pain
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