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Advocating for Yourself

Learning how to be your own advocate is an important step in the healing process.

A valuable start in taking charge of your health is to first be educated. Understand as much as possible about your condition from trustworthy resources. With that knowledge, you will be empowered to communicate more comfortably with your physician. Speaking openly with your healthcare team allows you to ask questions that are important to you as well as better understand the answers you will receive. 

Involving family, friends, co-workers, and other healthcare specialists to help you through this process is important. Support groups and networking sites are places where you can meet people with the same condition. Surrounding yourself with a community of people who are like-minded will give you peace of mind that you are not alone.

You are in control

Always remember that you are in control throughout every step of your health journey.  If your healthcare professional is dismissive of your complaints, try switching providers. If any visit, procedure, or process makes you feel uncomfortable, you can opt out of it. If you feel you are not ready to take some treatment steps, that decision is up to you and you alone.

Be open with your healthcare providers if any process or treatment is provoking anxiety. Anxiety is a natural response to an unfamiliar situation and if you are experiencing it, you are far from alone. Your providers will be familiar with anxiety and may have tools to help you cope.

Be open with your healthcare providers if any process or treatment is provoking anxiety. Anxiety is a natural response to an unfamiliar situation and if you are experiencing it, you are far from alone. Your providers will be familiar with anxiety and may have tools to help you cope.

Seek Support

If there are people in your life who are dismissive of your symptoms, try to educate them about IIH by directing them to this website. However, know that you are not responsible for their reaction to your condition. Try to surround yourself with people who can be supportive and helpful to you. For some patients, that means joining an online or in-person support group. You can find a list of support groups on our Resources page.

We invite you to browse this site to learn more about how to support and reclaim your health.

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Patient stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

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