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12 Things Idiopathic Intracranial Hypertension Has Taught Me

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September is Idiopathic Intracranial Hypertension (IIH) Awareness Month.

This year, three days before the beginning of IIH Awareness Month, I was trying to wrap my head around the fact that three years prior, I was completely healthy.

Three years ago, on August 28th, I finished work, enjoyed Friday night dinner with my family, drove to a friend’s house, shared laughs around the bonfire while they all drank, drove home, crawled into bed…and the next morning I woke up feeling hungover despite having never had a sip the night before. I woke up with a migraine from hell, feeling nauseous, feverish, exhausted, dizzy…just in an overall haze. And it’s even weirder to think that I still experience those symptoms, and then some, on a daily basis in varying intensities.

In three years, I have gained eight diagnoses, twice as many medications, and a totally different perspective on life.

Being chronically ill has been extremely difficult, there is absolutely no doubt in that – but being chronically ill has taught me a lot as well:

1. It has taught me I’m a lot stronger than I ever thought I was.

All but one of my toughest days (and nights) have been in the last three years and I have survived them all.

I overcame working full-time and being a full-time student all while being chronically ill with multiple chronic illnesses.

2. It’s taught me that I am never alone.

I have the most incredible, thoughtful, loving, supportive father. I couldn’t be luckier.

In June of 2016 I created a support group for people with increased intracranial pressure (like me) and in two years it’s grown to almost 1,800 people across the world. Every day I am reminded that I am not the only one struggling with this debilitating chronic pain.

3. It’s taught me that it’s OK to not have the answers.

Unfortunately, the medical system is backed by science and science is changing every single day. That’s why they call it “practicing” medicine. This means that it can sometimes take years to get diagnosed. As badly as we want answers and as frustrating as it is to not have them, it’s OK to not have them and take the time necessary to find the right doctors and get the right medical care. It is better to be undiagnosed than misdiagnosed.

4. It’s taught me it’s OK to not have the right things to say when others are hurting.

I have learned that just because you have been through similar situations doesn’t mean that you know what someone is going through. Everyone copes with things differently and sometimes it’s better to not say anything at all and just let the person who is hurting know how deeply sorry you are and that you are there than to say the wrong, well intended, but hurtful thing.

5. It’s taught me to be a better listener.

As the saying goes, “We were given two ears and one mouth for a reason.” Often those with chronic illness just need to be heard. They need to know someone is listening, they need to feel validated and less alone. They don’t expect you to get it, they just need someone to listen.

6. It is OK to share your story.

It is always OK to talk about your journey. Whether with friends and family, with a counselor, therapist, or support group, or on social media – share your truth. More than ever people are being diagnosed with these rare conditions and feeling isolated and alone. It’s important that we reach out and let them know that they (and you!) aren’t alone.

7. It’s taught me how important it is to prioritize the things that mean the most to me.

Because energy is limited and pain and symptom flares limit it even further.

8. It’s taught me to be more in tune with my body.

If I am not listening closely to my body and paying attention to the boundaries it is trying to set for me, I could not only end up in a dangerous situation but also end up paying for that mistake for days.

No one can know what is going on with your body better than you and you can’t know your body if you aren’t paying attention.

9. It’s taught me how to be a better advocate.

You may have incredible communicating skills but it is incredibly difficult to keep a clear head and train of thought when you feel like complete and total crap or are in tremendous pain. For this very reason, it’s important to write down any new symptoms you may have been experiencing, any questions, etc., that you may want to discuss with your doctor. And if at all possible, bring someone with you who is familiar with you and your medical history. A second pair of ears is always beneficial.

10. It’s taught me that it really truly is the little things that matter most.

For example:

I’m at work and having a bad day. Maybe it’s because my pain is high or I’m feeling confused because my increased intracranial pressure is causing a lot of communication issues due to word block. My dad stopping by with surprise Chick-fil-A breakfast.

Or maybe it’s the weekend and I’m really sick and stuck in the bathroom and my kitty won’t leave my side and keeps coming over and rubbing his nose and cheek against mine.

It doesn’t take a lot but those small gestures that let you know that someone is thinking of you and they are there mean so much when you are really struggling.

11. It’s taught me I control my attitude.

As the saying goes, “You may not be in control of your situation (you can’t change the fact that you are chronically ill) but you can change the way that you react to it (your attitude).”

It may be incredibly difficult sometimes. You may have every reason to be angry sometimes. You may want to let your self be angry sometimes. And that is completely OK. And believe it or not, it’s actually healthy. But you cannot unpack and live in those moments forever. Is it fair that you have to live this life? Absolutely not. Is it hard? Absolutely. But it’s the life you have been given and you have to make the absolute best of it.

12. It’s taught me that “can’t” really does get you nowhere.

When I was little my step-mom used to say, “Can’t never did anything.”

By that she meant that can’t never got anyone anywhere. It never did anyone any favors.

After I got sick I found myself getting to the point where my inner dialogue would continuously come back to, “I can’t do this anymore…I just can’t do this anymore…”

But the thing is, she was right, can’t never did anyone any favors. Once you stop looking at it as, “I can’t,” you stop waiting around people and doctors to make you better.

You become the quarterback of your team.

You do the research and find the specialists and request the referrals and get the ball rolling.

You realize that these doctors work for you, not the other way around. So they are suppose to bring information to you and help you make informed decisions, not tell you what you are going to do with your body.

You find the inefficiencies in your day to day life and weed them out because your energy is a precious commodity. This allows you to have more energy and say “I can’t” a whole lot less and “I’d love to!” a whole lot more.

Originally published: September 20, 2018
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