10 Things People with IIH Wish You Knew

This post was originally published in September 2022 in honor of IIH Awareness Month. This is an updated version.

If you’ve ever found yourself in a supportive role for someone grappling with idiopathic intracranial hypertension (IIH), you know that there’s a lot to try to get a handle on. You’ve probably done the research, worn the supportive hat, and perhaps even earned a virtual PhD in IIH awareness. But let’s be real – understanding the ins and outs of IIH from people on the outside looking in doesn’t hold a candle to getting your information straight from the source.

In my previous posts, I delved into the intricacies of IIH, from its definition to my personal journey with the condition. Today, let’s explore the top 10 things that those facing IIH not-so-secretly wish you knew. Because being a true ally involves more than just a sympathetic nod in our direction.

10 Things People with IIH Wish You Knew

As we dive headfirst into the realm of idiopathic intracranial hypertension (IIH), forget the medical jargon and serious talk. Today, we’re rolling up our sleeves and diving into the real stuff, the nitty-gritty that textbooks skip. Because the only way to really be an ally to those with IIH – or any chronic illness – is to get your information straight from the source. This authenticity offers a more accurate and relatable perspective compared to clinical descriptions. So buckle up, it’s about to get real.

It’s more than just a headache:

Living with IIH isn’t just about dealing with headaches; it’s a whole medley of things. Beyond the head-thumping moments, there are the dizzy spells, the spinny episodes we call vertigo, and that constant ringing in the ears, known as tinnitus. Add in papilledema, a fancy term for optic nerve swelling, the occasional nausea, light sensitivity, and the perpetual fatigue that never seems to take a break. It’s like a mixtape of symptoms, each playing its unique role in this daily life concert.

Setting the record straight on IIH is a game-changer. By shining a light on the other symptoms people with IIH experience, we’re giving a realistic picture of what folks with IIH go through. It’s like unlocking a secret level of understanding. Getting rid of the “just headaches” idea means everyone can truly understand the variety of symptoms and be on the same page. This helps others be better allies and allows our support team to be able to assist us in the best way possible.

The severity can change a lot – and quickly

IIH is like a personalized rollercoaster; tons of ups and downs with unexpected twists and turns. The intensity varies from person to person, and sometimes comes on strong from seemingly nowhere. Sometimes a person will only experience symptoms occasionally, others can struggle every day.

This variety of experience is another thing that adds to the complexity of this condition – even the same person can have a multitude of different experiences on any given day. My experience is like this – some days I wake up and can tell I’m having a bad day. On other days, I think I’m fine, and then out of nowhere I find myself on the high end of the pain scale.

It’s crucial for those who want to support individuals with this condition to understand this variation. It helps caregivers, friends, and family members to recognize that each person’s experience with IIH is unique, and their needs and challenges may differ. This knowledge encourages a more personalized and empathetic approach to support, allowing for flexibility in caregiving and assistance based on the individual’s specific circumstances. It also emphasizes the importance of staying informed about the current state of the person’s condition, as it can fluctuate, and adjustments in support may be necessary over time.

IIH is 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.

Understanding the stigma around IIH is important for showing empathy, providing better support, and challenging stereotypes. It helps create a more informed and supportive community, encourages open communication, and contributes to improved treatments and awareness.

Not everyone wants medications

It’s true: not everyone is on the medication bandwagon. Personally, I’m the rebel who said, “Nah, thanks” to the prescribed pills. They 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.

Embracing diverse approaches to managing IIH fosters a more inclusive understanding of the condition. It’s empowering to recognize that there isn’t a one-size-fits-all solution, and individuals have the agency to explore what works best for them. This variety in choices also underscores the need for a holistic approach to healthcare, where physical, emotional, and lifestyle factors are all considered. By respecting the diverse paths people take in addressing IIH, we contribute to a supportive community that acknowledges and values individual preferences and experiences in navigating this complex condition.

Not everyone gets surgery

Severe 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 (like mine), 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.

Understanding and respecting the choices individuals make regarding treatment options, including surgical interventions, contributes to a more compassionate and inclusive perspective within the IIH community. It emphasizes that each person’s journey is unique, and the challenges they face are significant, irrespective of the specific medical interventions they qualify for or choose to pursue.

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.

Supporting someone with IIH, whose pain doesn’t align with the traditional pain scale, requires a compassionate and individualized approach. Acknowledge that their experience of pain goes beyond the numerical scale and may be constant, making it challenging to convey the depth of their discomfort. Listen actively, and encourage open communication about their unique pain experience. Be understanding that their threshold for pain may differ from conventional measures. Offering practical assistance, such as helping with daily tasks or creating a comfortable environment, can make a significant difference.

Early retirement from some life activities

With IIH, we often retire from certain activities before they retire 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.

Being there for someone with IIH who had to give up a hobby or part of their life because of their condition is all about understanding and empathy. Let them know you get how tough it is and that you recognize the importance of what they had to let go. Give them space to share their feelings and frustrations without judgment. Encourage them to talk about the good times related to their hobby. While you can’t bring back what they’ve lost, explore new ways to do things together that suit their current situation. Find activities that match their abilities now. Most importantly, remind them that your friendship and support go beyond any specific hobby or activity, sticking around through the challenges their condition brings.

Living with IIH can be 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.

Encouraging and supporting someone with IIH to connect with others who share similar experiences is a powerful way to alleviate feelings of isolation. Sharing stories and insights with individuals who understand firsthand what they’re going through can provide a sense of validation and camaraderie. Help them identify local or virtual support groups where they can meet others facing similar challenges. Sometimes, just knowing that there are people who truly comprehend the struggles can make a significant difference.

Having an idiopathic illness is frustrating

“Idiopathic” sounds impressive, but it simply means that there’s no known cause or cure – just a lot of trial and error. Treatment plans are like trying to find the perfect Netflix show; you’re swiping, hoping something clicks. 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.

Supporting someone dealing with idiopathic conditions and illnesses like IIH involves a blend of empathy, understanding, and practical assistance. Begin by actively listening to their experiences without judgment, allowing them to express their feelings and concerns openly. Educate yourself about the specific challenges associated with idiopathic conditions, such as IIH, to better comprehend their situation. Be a reliable and non-judgmental presence, recognizing that the uncertainty surrounding idiopathic conditions can be emotionally taxing. Overall, your understanding, patience, and willingness to assist in both tangible and emotional aspects can make a meaningful difference in their journey with idiopathic conditions.

We need more allies

We’re not asking for a superhero cape (although it wouldn’t hurt). 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’ve been on this journey to better understand and support your loved ones dealing with chronic illness, I’ve got a little something for you. Grab my freebie, “10 Chronic Illness Affirmations“. These aren’t just words; they’re tools crafted to help you provide comfort and understanding. While I created these for those with chronici illness, you can also use these affirmations to offer a positive boost when words may fail. It’s not just about what your friends or family are going through; it’s about how you can be there for them. Fill out the form at the end of this post, snag your affirmations, and let’s continue building a supportive community together. Your compassion matters, and these phrases can be your allies in supporting those facing chronic illness.

Until next time,