One of the conversations I have most often with my clients is about situations in which they are not being listened to. Ignored. Sidelined. Treated as if they are invisible.
Feeling left to suffer with their chronic pain alone. In a word: marginalized.
And keep in mind that that the result of being marginalized can leave you feeling isolated.
They experience marginalization in all areas of their lives, at home, at work, at school. And in the offices of their healthcare providers. Here are a few examples:
A client I’ll call Tommy is living with a chronic condition that causes pain. He has been doing well with his current treatment approach, he is comfortable with his current treatment approach and is confident that he is able to stay on top of his condition. Last week, his doctor told Tommy that they want him on the newest medication and gave him the date on which he will move to this new treatment. Not asked. Told.
Meanwhile, a client I’ll call Kara recently moved with her partner and children to a new town. And that meant moving her healthcare to a new provider. Kara has a chronic condition that is relatively rare and awareness among healthcare providers is not widespread. She recently met with a physician she found on the Internet, whose profile included experience in treating a related condition, so she was hopeful he would be able to treat her. When she told him about her pain, the physician’s tone suddenly changed. He told Kara that she would need to prove her diagnosis to him, with pictures and imaging. He also told her that he is skeptical of patients who report chronic pain, and said their pain is often psychosomatic, or that they have an addiction and are drug seeking. In other words: This is all in your head. Or worse, you’re an addict. Patronized. Disrespected. Pushed back into the shadows.
Are these examples bringing back any memories or pushing any emotional buttons, based on your own experiences living with a chronic condition and chronic pain?
And You With a Question: Don’t I Deserve Better Than This?
A common theme in conversations I have with my clients who are living with chronic conditions is the feeling of being pushed onto the margins of life, or ignored, or disrespected. And feeling that their chronic condition has automatically branded them in some way. So I am going to begin by answering my own question.
Yes, you deserve better.
However, as you read in my examples, deserving better sure doesn’t guarantee that’s what you will experience. As you probably already know.
And also yes, I have some ideas to help.
You Just Have to Wonder… Where Is This Coming From?
Chalk this up to my mental health professional side, but it is my nature to want to dig in and ask what’s behind someone’s behavior. In this case, the someone who is the cause of your feelings of pushed to the sidelines. And, to be honest, I also am all about trying to not automatically assume the other person has negative intentions.
Based on my experience, here is what I think causes other people to push aside or otherwise isolate an individual dealing with a chronic condition:
Fear. Of saying th wrong thing. This can result in ignoring you. Or feeling compelled to say something that is totally not what you need to hear.
Ignorance. In the lack of knowledge, it is human to make assumptions about chronic conditions and pain. And you know how assumptions can leave you feeling.
Helplessness. It is human nature to want to help someone in need, and even to feel compelled to step in with a solution when someone else has a need, feeling as if they should know what to do. Knowing they can’t help you may result in the other person ignoring your needs. Helplessness can also result in denying the existence of your chronic condition and pain.
Flatfootedness. Sometimes people mean well but they don’t say it well. Heart is in the right place, foot is firmly in mouth.
Of course, some people are also just plain self-absorbed, if not mean-spirited. However, coping with isolating behavior, and the feelings that result, might be less painful if your take the time to think about what might be behind it.
Coping. Starting with Optimism
I am going to quote an old saying here: You can catch a lot more flies with honey than vinegar. So just to follow up on what I said about what might be behind marginalizing behavior by other people, I always encourage my clients to assume goodwill when this occurs and do what they can to adopt a more positive, optimistic approach to these situations.
Here are some ideas:
Be compassionate. I am a big believer in compassion, being compassionate toward ourselves and directing that compassion outward toward others. I think that if you live a compassionate life, you have a firm foundation for weathering the day to day challenges that come your way, and that includes people in your life who just don’t seem to know any better. Letting other people be human helps us not to take everything personally. Compassion is about giving yourself some space and giving space to others.
Look for teachable moments. The New York City subway system has a motto that passengers are constantly reminded of: If you see something, say something. So if someone says or does something that shows lack of understanding, use that moment to gently let them know how you were affected, and what they could do instead. Something like: “When you tell me what I will be doing without talking things over me, I feel like I am being ignored. Like what I might want doesn’t matter. So I’d like to tell you how not to make me feel this way if you’ll be willing to listen.” My clients have reported some positive results with gently speaking up in the moment to be a “patient’ educator – emphasis on patience – when other people marginalize them.
Yes, be optimistic. Sure, I am Mr. Optimistic but I am also realistic. Save yourself some heartache by not expecting miracles. Expecting people to think, feel, or behave the way we wish they would, can be a losing proposition. People come around in their own way and in their own time, or, sadly, sometimes not at all. Some of the people you encounter may be willing to look at how they have made you feel marginalized, and even appreciate your feedback. Others not so much. Either way, you tried.
Walk Gently, but Carry a Big Stick. And Stick Up For Yourself!
I frequently talk with my clients living with chronic pain about being empowered. We also talk a lot about empowerment in support groups and meetings. We talk about empowerment because it is so essential to getting what you need as a someone living with chronic pain. Empowerment means being an advocate for yourself.
When you find yourself facing off with someone who is making you feel marginalized, this is a time to engage your advocacy skills. I discussed the gentle approach. Now I’ll address a more direct approach.
Sure, gentle. But firm. If the educational approach doesn’t work, then it’s time to take a more direct approach. Let the other person know that you won’t put up with the way you are being treated. This might mean saying something like: “I don’t feel like you’re listening to me.” “We need to talk about what works for me.” “Don’t make assumptions about what I need.”
Work around the isolators. Try to find people who treat you with respect. That might require going over the head of a healthcare or education professional, for example, to speak with their boss. Or approaching another staff member who is more enlightened or a better listener. Don’t assume there is only one route to getting what you need.
Have the facts. While that person who is ignoring or otherwise disrespecting you may not respond to your request/demand that they treat you like a real person, they may respond to the facts. So make sure you’re an expert on your own diagnosis. “Let me show you why I am demanding this.” Information is power. Use information to regain an equal footing with the person you are trying to communicate with. Nobody can dispute the evidence.
Know your rights. And insst they be honored. Those who ignore you or otherwise treat you like you are invisible. Again, gentle but firm. VERY firm if needed. We have Federal laws that protect individuals living with chronic conditions. which include firm guidelines on accommodations, as well as what constitutes an actual Civil Rights violation. Most organizations – workplaces, treatment centers, and schools – have their own guidelines in place. Take the time to get educated on what’s in place for the organizations you are associated with. When you experience marginalization, don’t hesitate to pull out the rulebook.
In the absence of a rulebook, insist on being respected. Not every situation has a rule or regulation you can quote. But that doesn’t mean you have to put up with being shoved aside or otherwise overlooked. In the absence of a published guideline, here’s an argument you can stand on: “Just Because. Just because I am a human being like you and I demand that you show me respect. That you listen to me. That you take my needs seriously.” Reserve the right to be a ferocious advocate for your rights.
Get support. It’s so important to have emotional support available when you need it. Taking care of your mental health needs to be a critical component of your overall self-care plan, as someone living with chronic pain. Build a support network of friends and family who can listen without giving advice, unless you want their advice. Being part of a national organization with local chapters is a great way to get support for you, and for your family, as well as to stay up to the second on the latest treatment developments. Support is power!
Don’t Wait to Deserve. Claim!
But one more time. When someone – a friend, family member, teacher, healthcare professional, and on and on – marginalizes you, they are reducing you to a medical diagnosis. Being marginalized takes away your personhood. Along with your rights. You also don’t have to sit back and be treated disrespectfully.
If you are living chronic pain, advocate for yourself. Power up! Seize your power. And hang onto it!
Gary McClain, MS, PhD, LMHC, is a therapist, patient advocate, blogger, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, and to listen to their own inner voice as they make decisions about the future. His email is: gary@JustGotDiagnosed.com. He welcomes your questions and comments.