Disclaimer: While I talk about my own experience, and information based on my own research, and offer tips for maintaining wellness while dealing with a chronic illness, I’m not a licensed medical physician, psychotherapist, or psychologist, and I’m not offering medical or psychiatric advice.

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If you know anyone with  Idiopathic Intracranial Hypertension (IIH) you probably consider yourself a supportive loved one or ally.

Chances are that you’ve even done a fair amount of research to try to understand the condition and what people with IIH go through. But sometimes, the best way to understand someone is simply to ask them.

However, talking about idiopathic intracranial hypertension with your loved one may be hard, awkward, or just not possible for whatever reason. But that doesn’t mean you can’t still learn about their experience.

In my last two posts, I shared information about what IIH is, and my experience getting diagnosed and living with this condition.

In honor of Idiopathic Intracranial Hypertension Awareness Month, below is a list of 10 things people with IIH wish you knew, offering you a glimpse into the reality of living with the rare and chronic condition. By learning more about what your friends and loved ones with this, or any other, chronic condition deals with, you can better position yourself to offer effective support and be a true ally.

10 Things People with IIH Wish You Knew

• It’s more than just a headache

• Idiopathic Intracranial Hypertension can present with a host of different symptoms – not just headaches. Other symptoms can include dizziness, vertigo, tinnitus, papilledema, nausea, and chronic fatigue.

• The severity can vary greatly

• IIH affects everyone differently. Some may only experience symptoms occasionally, while others struggle every day. And the level to which one person struggles can be so different from another person’s. The way IIH feels to each person is a unique experience.

• It’s extremely stigmatized

• IIH is typically thought to mainly affect women of childbearing age who are overweight, thus putting a stigma on those that fall into this category, even though there’s evidence that IIH also affects those who are of average or underweight, men and children in almost equal amounts, and no evidence is given that losing weight can actually help lessen or reverse IIH.

• Not everyone wants medications

• I’m one of those people. The medications commonly prescribed for IIH made me sick in other ways and did nothing to alleviate the symptoms or prevent any of the comorbidities. I take OTC medications to help lessen some of the symptoms, and other people take nothing at all or seek holistic treatments. Every choice is valid and is up to the individual to make the choice that’s best for them and their healing journey.

• Not everyone gets surgery

• Sever IIH is commonly treated with surgeries that can include adding stents and shunts to help drain cerebrospinal fluid (CSF) from the brain, but not everyone has these surgeries. Some people’s IIH symptoms don’t qualify them for such extreme measures, while others simply don’t think the risks are worth it. Whether or not someone has surgery for IIH doesn’t change the fact that they are living with a chronic and debilitating condition.

• The normal “pain scale” is very different for someone with IIH – and with most chronic illnesses

• You know that pain scale that you may see at the doctor’s office with the smiley face that changes to a really upset face and it’s given a number between 1-10? That’s completely irrelevant when it comes to IIH & other chronic illnesses. Chronic pain changes the way your brain interprets pain in general – it gets trained to stop registering certain levels of pain simply because it experiences them so often. Most people with chronic pain & illnesses operate at a level 3 or more constantly. We don’t know what it’s like not to be in pain, and what a level 7 feels like to someone who doesn’t experience chronic pain will feel very different to those of us who do. This can make it difficult to accurately describe our pain to physicians, who may feel we’re exaggerating our symptoms based on a scale that isn’t made for us.

• We sometimes give things up before those things are taken from us

• IIH affects every area of our lives, and there are certain things that become inaccessible or just dangerous for us to keep doing because of the risk of exacerbating symptoms or our inability to maintain our safety while doing them. Some of these things are driving, swimming, flying in planes, working, carrying heavy items, and exercising. I myself gave up driving shortly after being diagnosed because the amount of brain fog I experience and random bouts of head pain made me afraid that it would happen while driving and make it to where I could no longer control a vehicle.

• It can feel extremely isolating

• When you live with a chronic illness, you may find yourself self-isolating because the people in your life no longer relate to you the same way. Isolation can also happen because you end up quitting your job and other social activities due to the severity of your IIH or other condition. This is why it’s so important for us to reach out to other spoonies, and why online resources, groups, and activities can be so helpful for those living with chronic illnesses.

• Having an idiopathic illness is frustrating

• Idiopathic means that there’s no known cause or cure. It can feel frustrating to have an illness that’s not well understood, and treatment plans that feel more hit-or-miss, and like you’re just guessing at what will help & what won’t. And knowing that there’s no known cure can make finding the courage and hope to keep going and thriving that much more difficult.

• We need more allies

• Those with IIH need more people in their corner. We need others to learn about this condition and help us advocate for more research, more and better treatments, and more awareness to help us feel supported.

Living with something that’s considered an invisible illness that isn’t often known or understood can present unique challenges, as you’ve learned from the above list.

That’s why we need our friends, families, and others with chronic conditions to step up and join us in our journey to learning to live well with this chronic condition. 

If you haven’t already, reading this post is a great place to start if you’re wanting to learn more about IIH.

And if you’re a fellow spoonie who needs some support in learning to thrive through your chronic illness, be sure to check out my 10 Chronic Illness Affirmations printable below.

Until next time,

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