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.
In a word: marginalized.
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 Paul has been doing well with his current treatment approach, he is comfortable with the medication he is using and is confident that he is able to stay on top of his condition. Last week, his doctor told Paul that they want him on the newest product and gave him the date on which he will move to this treatment. Not asked. Told.
Meanwhile, a client I’ll call Natalie recently moved with her partner and children to a new town. And that meant moving her healthcare to a new provider. Natalie has a 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 more generally recognized and related condition, so she was hopeful he would be able to treat her. When she told him about her diagnosis, the physician’s tone suddenly changed. He told Natalie that she would need to prove her diagnosis to him, with pictures and imaging. He also told her that with her relatively low dosing, the medication was most likely being given as a placebo. In other words: This is all in your head. Patronized. Disrespected.
Mikey is a seventh grader with a chronic condition. This is the first year he has been in an all boy’s gym class. His condition is well managed, and his parents have worked closely with all of his teachers to make sure they understand his condition and what this means for day-to-day participation in school activities. His teachers have generally been onboard. Not this teacher. He informed her that he will not be responsible for any injuries Mikey might receive in class. Last week, the other kids went swimming and Mikey was asked to sit on the sidelines. Marginalized. Humiliated.
Are these examples bringing back any memories or pushing any emotional buttons, based on your own experiences living with a chronic condition or as a parent of a child with a chronic condition?
And You With a Question: Don’t I/My Child 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 diagnosis has automatically branded them in some way. Parents have the same concerns about their children. So I am going to begin by answering my own question.
Yes, you deserve better. And yes, your child deserves 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 you, or your child, feeling 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 marginalize an individual dealing with a chronic condition:
Fear. Of saying the 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 you know how assumptions can leave you or your child 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 diagnosis.
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 marginalizing behavior 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 marginalized you, 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 conditions 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 a chronic condition as well as a parent. Empowerment means being an advocate for yourself or your child.
When you find yourself facing off with someone who is marginalizing you, 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.” You might also teach your children to advocate for themselves in a more direct manner: “The school nurse has a file about me” or “You can call my parents if you have a question.”
Work around the marginalizers. 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, or your child’s, chronic condition. “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 insist 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 or your child 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, or that you have to step aside while your child is being mistreated. 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/my child’s needs seriously.” Reserve the right to be a ferocious advocate for your rights and/or your child’s 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 a chronic condition or as a parent. 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 with a chronic condition, advocate for yourself. If you are a parent, teach your child to advocate for themselves.
Power up! Seize your power. And hang onto it!