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I am suffering the debilitating symptoms of a cerebrospinal fluid (CSF) leak and have been this way for 11 months now. I just got back from an appointment with a doctor in another city who has agreed to treat me through a therapeutic blood patch. This has taken some time, and it has been a long and wearying road at times. Were it not for the various outlets through social media, I think my journey could have been a lot different.

I had been suffering terribly from intractable “five alarm” headache pain for more than six months with no knowledge except what my brief glances at the internet could glean. As part of my symptoms, I have had terrible photophobia, and putting on my glasses to focus caused my pain to go through the roof. I was briefly prescribed prednisone, which allowed me to use the computer more, and thankfully I found some reliable social media sites which lead me to find people with the same illness.

I cannot even begin to tell you how important that connection to people like me has been. Knowing that there are others out there who have been down the same path gave me hope and a desperately needed path forward. Being able to ask questions, and find journals and articles written dealing directly with my specific symptoms, allowed me to have fair and informed conversations with my doctors. Together we were learning about this illness through the dedicated people on these sites.

Many days, I would wake up with something completely new going on and my mind began to worrying about whether this new development could be serious. The experienced spinal CSF leak people on the various sites were able to give me sound advice and let me know if they had experienced the same things. Their knowledge was often more informative than the breadth of understanding of my own doctors. All of it helped to guide my care along, as I would share new insights with my doctors.

Having a spinal CSF leak can be very trying. It is a rare condition and doctors are not familiar with diagnosing and treating patients with this illness yet. This means we, CSF leakers, have to advocate, educate, and propagate all the important developments that are happening in the treatment of this illness. Having places on social media as well as being able to write about our experiences on The Mighty are having a huge impact on spreading the word about our condition.

As much as I love the information available in private groups on social media sites, it is crucial to cross-reference what is being said with trained professionals and people who have really been through the process. A tiny word of caution about social media is imperative. Not everything I have heard has been accurate, so I make sure to double-check my information. When in the throes of illness, people can get desperate and emotional and it has been really important for me, to be sure that what I am sharing is my experience, and that I am not an authority on this issue. Go to the experts, ask questions and bring up validated facts, ask people where you can find the information they are quoting, and make copies to take to your doctors. It is so important for all of those suffering from CSF leaks to bring light to the studies and evidence that is out there so that we can all get the help we need!

These social media sites are specifically made to support and help one another. My experiences have been nothing but positive and the administrators of these sites are often still suffering or they have been in the same struggle as I have. Their kindness and dedication has been life changing for me and we are a community of people who are trying to treat our fellow sufferers as brothers and sisters. There is a sense of caring that can be absent in the medical field when doctors and others do not understand this disorder. When in doubt, go to someone who has walked the same path as you… they have marked the tough patches and know how to avoid the pitfalls.

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Thinkstock Image By: BrianAJackson

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I love my rare condition family.

On behalf of my fellow friends and family with invisible illnesses and rare conditions as well as myself, let me just say that, when you live a healthy life, it’s almost like wearing blinders.

It’s like being oblivious to true health struggles, and in a way that is a blessing – to not have to know about chronic illness, see it or hear it.

To not have to see rare conditions…what a luxury.

But then there are those like me, my CSF leaks family and many others, who face illness every day. It’s in your mind, your heart and your being. You can’t get away from it and you can’t ignore it because for some that would mean death.

For some it is the difference between life and death to remember every second that it’s there – that illness, that disorder, that rare condition…

But people with chronic illnesses, invisible illnesses and their family members are some of the strongest and most courageous people ever! They are seriously in a class of their own.

When a friend or family member makes a comment or post about their struggle or hardship with a rare condition, it’s one of the best things they can say and do. It’s important to let someone in, let someone help, let someone know… Because every post also means awareness is being raised!

And if you notice that their posts are getting angrier or they’re becoming more passionate about their cause, that’s when you reach out and let them know it’s OK to vent and to be pissed off! A real friend will stand there and scream by your side and say, “F this condition and all the pain that comes with it!”

I’m here to be pissed off with you, all of you – or share in whichever mood you want to be in on whichever day you choose!

Never stop posting, never stop venting and never ever worry about someone who doesn’t understand what it takes to hold yourself and your family together.

#RareConditionLife

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Day after day and week after week of chronic pain can wear a person down and make even the most normal day difficult. And having a birthday after weeks, months or years of debilitating pain can be even more difficult.

During any stage of a chronic illness, the more I feel I’m in control of my own care, the better things go. If I’m informing myself alongside my doctors, I feel I can keep up with the plans and have a say in how I wish to be taken care of. Reaching out to other doctors, asking for a second opinion if necessary and going back to conversations as we learn more are ways for me to feel as though I have some say in the outcome.

Planning a birthday when you have a cerebrospinal fluid leak (CSF) or chronic pain can be a similar situation:

1. It’s your day.

Plan the birthday you want to have, so you aren’t disappointed

2. Pick two dates.

Tell people you’ll have your birthday celebration on a set date as long as you’re feeling up to it and pick an alternate date that all parties can attend in case the first date ends up being an “off day” for you.

3. Know your limits.

Limit the number of people at your celebration to make it easier on yourself for preparation and for postponing if needed.

4. Keep it simple.

Order in food from a favorite restaurant, bring in pre-made dishes from your local supermarket and ask others to bring specific dishes.

5. Plan for people to stay a short time.

A great birthday where you feel your best for two hours is much better than having a few people stay for a long time where you may get tired out for days to come.

6. Timing.

Have the party at your best time of the day. With CSF leaks, we are often plagued by symptoms later in the day. A birthday brunch or lunch may be better than planning an event at night when you’re already tired.

7. Delegate.

People just love to help if you let them. Tell others how you want the house set up, how the kitchen will work and how you will serve drinks.

8. Skip it.

It’s important for you to know if you just want to skip your birthday this year. Maybe you just feel you don’t want to celebrate. Feel free to make that decision for yourself, and your family and friends will have to respect your wishes no matter what they are.

A birthday is a special day for many, and it can feel like you’re being forgotten on your birthday as the days just melt into months. Having a day that marks another year has elapsed can be challenging for many with a chronic illness such as a CSF leak. Sometimes marking the day just emphasizes that things are still not “normal.”

Whatever your circumstances, you can be the decision maker for this birthday!

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Lead photo source: Thinkstock Images


I read a fantastic book many years ago that changed the course of my life. In it I read that there are two ways of being in illness: there is illness with suffering, and there is illness without suffering, and you have to choose which kind of patient you would like to be.

At the time, I thought that was a little strange, but when I first got sick with a cerebrospinal fluid leak in March of 2016, I quickly realized that I had to make that very choice.

I chose illness without suffering.

What I mean by this is that I decided I was not going to call a bunch of people and tell them how horrible this illness was and wallow in inaction.  That is not to say that I did not solicit advocates and seek advice from a few very dear people in my life. What it did mean is that I had some choices to make and I had to make them each day.

1. Choose happiness: I choose, despite my horrible headache, nausea, and other neurological symptoms, that every day I will find something to make me happy. A flower, a walk in the garden, a video to make me laugh, a special cuddle with my dogs, a text to a friend… anything that will bring me a ray of light.

2. Choose action: I did not want to spin my wheels so I inform myself and then I take action to find a way of getting answers. Yes, it is taking a long time, but I am slowly but surely getting there and not feeling that I am helpless and hopeless.

3. Look outside myself: I dedicate time every day to think about someone else who is struggling. I had three friends with cancer this year and choose to send out positive vibes to them each day. I send them texts, presents, cards, I call regularly because it does me a world of good to think of someone else and let them know they are loved.

4. Inform myself: When I am well enough I research as much as I can. My neurologist admits to not having a lot of experience with CSF leaks so I do a lot of research with very reputable sources so I can bring up-to-date information to him

5. Connect: I make sure that I connect with others outside of my four walls.  I sent out a message that I would love visits and phone calls because I feel very isolated and lonely at times. I have connected to Facebook pages, Inspire site, CSF Leak Foundation, and headache groups for support and advice. My husband can only talk about this issue for so long… it is exhausting making it through each day for him caring for me and running a household… he needs a break! (And I needed a place to talk about the same things over and over in hopes of hearing just the right thing to make it all click for me).

6. Live in Gratitude: Much like choosing happiness, I have to choose every day to highlight the things that I am grateful for. This is true of my life at any time but I have found it particularly helpful since my CSF leak. I talk and write about my gratitude so that I can remind myself, both inside and out, of all the many joys and wonders that exist in each day for me.  From tiny little moments of grace that come in the blink of an eye (like when my dog really gazes into my eyes and we each know how important we are to one another) to the really big moments of gratitude like when a family member takes the time and effort to come an visit me and we can share great laughs and intimate times to really know how things are going for one another.

7. Give Back: When I had a little bit more of a handle on things in terms of what was happening with me, the natural teacher in me came out, and I knew it was time to give back whatever I could. I started a blog to help others like me and I have reached out to organizations to open up dialogue and awareness. I am just at the beginning of this part of my journey but already I feel better for reaching beyond the bounds of my body. 

So, how will you choose to live in illness? We have no decision of whether or not we have this debilitating illness, but I believe we certainly have a choice of how we are going to live with this illness!

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If your household is anything like mine, it’s a holiday tradition to watch some of the classic specials such as “Santa Claus is Coming to Town,” “The Grinch Who Stole Christmas” and good ‘ole “Frosty the Snowman”; all timeless and ageless “must-sees” for the yuletide season.

The one that resonates the most with me is the story of “Rudolph the Red-Nosed Reindeer.” Adapted from a song, the story is about a reindeer named Rudolph, who has a unique characteristic. He has a shiny nose. This meant that he was different and unlike all of the other reindeer, who, by the way, chose to laugh and call him names. Rudolph’s own parents viewed his difference as a flaw and tried to cover up the unique characteristic about their son. When your own parents are embarrassed or not accepting of you, that really hurts.

The one person who did accept his difference was a cute reindeer named Clarice; however, her support was quickly silenced by her father, who also wanted nothing to do with Rudolph.

Rejected by his friends, coach and parents, Rudolph decides to run away from home. He is joined by Hermey, an elf who also deviates from what is expected of him. Instead of wanting to work as a toymaker, Hermey wants to be a dentist. Rather than be supported to reach his dreams, he too was shunned.

As Rudolph and Hermey go along their journey, they find themselves in the Island of Misfit Toys, where unconventional toys go when they are rejected by their owners; unwanted because of their variance from a normal or typical toy.

After a long expedition, Rudolph and his friends decide to return to the North Pole. There he learns that his parents and Clarice are off looking for him. He also finds a troubled Santa who is about to cancel Christmas because the weather is too bad for him to take the sleigh out. As he begins his announcement, he suddenly notices Rudolph’s red nose.  Santa’s “aha” moment! Rather than be viewed as a flaw or inadequacy, his nose provides the means that saves Christmas Day.

“Wow,” I say.

The point I am trying to make is that there is deeper meaning in the story of Rudolph. As a parent who had a son with multiple disabilities, I can certainly relate to the inability of others to recognize what my son had to offer. He wasn’t included in the school play, yet he had a smile that could light up a room. I have heard countless stories from parents who work tirelessly to convince others that their son or daughter has the ability to work, learn and play with everyone else.

Each of us has unique qualities, diverse strengths and assorted interests. I hope that the story of Rudolph inspires people to embrace the diversity in all of us and that we find a way to make sure that no one is shunned or excluded from anything. It is what is different in us that can make a difference for others.

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Lead photo courtesy of YouTube: Dino Disco


I had known for a long time that something was wrong. As a senior in high school, I was struggling to keep up, and it was seemingly getting worse as time went on. The months encompassing my diagnosis were without a doubt the darkest I have ever experienced. The diagnosis wasn’t the worst-case scenario, but it wasn’t very positive either. At the age of 18, I sat in the office of a specialist as I was told I would be sick every day for the rest of my life.

And there was nothing they could do.

In the aftermath of my diagnosis, I struggled to fight the darkness. Despite feeling a little better physically, I found myself not wanting to get out of bed. I felt like my life was over before it had even begun. Any hopes I had of a normal life, career or even family suddenly seemed out of reach. I felt like there was no hope. It took me a few weeks to realize I couldn’t live this way. I couldn’t restrict myself and treat myself like I was sick and fragile. Two weeks after my diagnosis I made a crucial choice, one that will continue to have an impact on me for the rest of my life: I chose to fight back.

I began to drag myself out of bed in the morning. My entire body hurt, I constantly felt sick, but I made a promise to myself that I was going to fight with everything in me. I would not let this disease define me and decide my life for me. Every day I have to push myself to go on. It’s not easy, and some days are much easier than others. With chronic disease, every single day is a battle against your own body. You constantly have to fight back and propel yourself forward. It’s exhausting, and there are days when I just have to lay in bed because I don’t have the energy that day, and that’s OK.

In the famous words of John Green, “pain demands to be felt,” and this rings true of physical and emotional pain. Feeling pain is part of who we are as humans, and despite how it makes us feel in the moment, it makes us stronger in the long run. I didn’t know how tough I could be and how hard I could fight until I was faced with my diagnosis. Since then, I have become my own personal cheerleader, and my own biggest fan. I learned that above all, you have to fight for yourself because you and you alone are your own strongest warrior.

My disease taught me to appreciate the little things in life because when your daily life is limited, the little things become the big things. You learn to cherish every moment and celebrate your victories, no matter how small, even if it’s just getting out of bed in the morning. More than anything, you learn how to love yourself. You come to appreciate your body, even when it isn’t working how you want it to. You find out how to believe in yourself and push yourself to go on, even when it seems impossible. Most of all, you learn to see the beauty in life and the wonder in the world around you, whether you are viewing it during a walk through the park or from a day spent in bed.

This post originally appeared on The Odyssey.

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Thinkstock photo by Mercy_C_M_H

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