HOW TO BECOME YOUR OWN BEST ADVOCATE

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We, as patients, believe that by using our skills, resources, and connections, we can help the Slipping Rib Syndrome Organization to improve the diagnosis and treatment of the condition within the community.

Sharing our stories and experiences is crucial in raising awareness. We invite you to share your journey in our private discussion group, the SRS Info Outreach Group.

As patients, we strongly believe that our voices have the power to make a difference in dealing with this debilitating condition.

Thank you for your help and support in amplifying our voices so that medical professionals can better understand our struggles with this condition.

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MOVING FROM DESPAIR TO STRENGTH TO PUSHING FOR CHANGE -Article

Key points

• Feeling that no one hears or understands your problems can be frustrating and upsetting.
• A new in-depth study shows how you can get from frustration to results.
• Using the circle of advocacy, you can make a difference in your life and the lives of others.

When was the last time you found yourself running into a brick wall when you asked someone to help you with a problem? Did you back down immediately or figure out a way to approach the situation from a different angle? It’s hard for some people to keep pushing when it seems like the other person won’t give way. If you’re one of those people, you know how frustrating and demoralizing the experience can be, especially when the stakes are high.

Consider a situation in which you sought a specific form of treatment from a healthcare professional. You might not be the world’s expert on the condition, but you’ve done your due diligence and found that the option you discovered should at least be considered. However, when visiting with this person, they tell you it won’t work. Again, they’re the expert, and you’re not. But it is your health, and you feel you deserve to be heard.

This situation could describe your own experience, or it could be one that you encountered with a loved one whose health you’re responsible for, such as a child or other family member. In any case, you think your request is reasonable. It feels disrespectful and wrong to be dismissed so readily.

The Challenges of Being Heard

The need to be heard can rise in many types of interactions, not just in the field of health. You could have a customer complaint, believe that your boss is taking the wrong approach, or feel ignored by your friends or relatives when it comes to listening to your opinion. Whatever the case, you can learn from a model for understanding these unfortunate encounters developed in a recent publication by University of Technology Sydney’s Jane Hutchens and colleagues (2023) on the plight faced by women facing barriers with health care providers.

In setting the stage for the study, the authors define advocacy in a healthcare context as referring both to people’s ability to gain knowledge and use that knowledge to “assertively communicate and make decisions” as well as the “ability to get their needs made in the face of a challenge.” The 24 women in their qualitatively based study all had experienced cardiac problems either while pregnant or in their first year after giving birth.

More common than you might realize, these cardiac problems can lead women to lose trust in a health care system they find doesn’t give the condition enough attention. Imagine what it’s like to be extremely ill and hospitalized as a parent of a newborn child, and now imagine that, even worse, your medical team seems insensitive to your struggles.

This is more than a circumscribed problem, though. As Hutchens et al. point out, the “complex management” of their illness over their lifetimes “places significant demands” on these women. Making matters worse, these individuals need to make informed decisions in an environment of little research information and even fewer routes toward getting support.

Handling Roadblocks: 4 Themes

The research question addressed by the authors was whether they could identify consistent patterns in the experiences of their participants via the route of in-depth interviews., Hutchens et al. were able to find answers to this question by culling through their phone-based data. In the process, they identified four main themes. See which of these might apply to feelings you’ve had when you’ve faced your own obstacles:

• Theme 1: Silent dream scream. Feeling silenced, all of these women felt a combination of shock, fear, and confusion, feelings that led them to feel their needs were “lost in a vacuum of impotence.” When was the last time you felt this way?
• Theme 2: Easier said than done. This theme pertains to the lack of coordinated response the women felt they were getting from their providers. They came up with ideas only to be met with resistance, leading them to feel that they were getting nowhere. It was so upsetting that one woman proclaimed, “My whole personality changed. I was an absolute raving lunatic…”
• Theme 3: Crazy-making. Feeling their “lived experiences denied had a pernicious effect,” things only went downhill. Indeed, one participant stated that “they were telling me that I was going crazy.” Again, reflect on your own experiences either in health care or in other spheres of your life. Did it seem that people not only didn’t listen to you but also put the burden of the problem back on your shoulders?
• Theme 4: Concentric circles of advocacy. Finally, the last theme to emerge speaks to the resilience of the women in this sample. In time, they learned to take the steps necessary to build out strategies in a circular fashion to get what they needed. These strategies included women taking their own logs of their vital health indicators and the emergence of symptoms. They also did their own research on the condition, using that information in a proactive manner.

The final piece of the puzzle became community advocacy. Some organized social media groups, took on a range of projects to raise awareness and research, and provided peer support to other women, even expanding this to “more research and better care for future girls and women.”

Putting Your Own Voice to Work

As you can see, there is progression across these themes from despair to strength and change. Hutchens et al. noted that getting what you want can also be a function of personality. Not only do you have to be somewhat assertive (which may not come easily to you), but you also need to have the knowledge, the ability to communicate, and some connections to the resources you’re seeking, especially being able to do your own online digging.

Also required to get to your desired objective is a dose of self-compassion. By forgiving yourself for those feelings of anger, rage, or being made to feel “crazy,” you can avoid the trap of self-blame.

From the standpoint of the outside world, the Australian study also highlights the importance of “person-centered care,” a concept widely recognized as desirable across healthcare professions, including mental health, but often not adhered to in reality. Keeping your eye on this particular prize can help you insist on if you’re not getting, recognition of who you are as a person.

To sum up, standing up for your rights is an attribute clearly important when it comes to your health or the health of those you care about. Knowing the various stages, from frustration to success, is what will allow you to find the fulfillment of having your voice heard.

-Susan Krauss Whitbourne, Ph.D., ABPP, is a Professor Emerita of Psychological and Brain Sciences at the University of Massachusetts Amherst. She is also an Adjunct Professor in the Department of Gerontology and a Faculty Fellow at the Institute of Gerontology at the University of Massachusetts Boston.