The writer rock climbing on a mountain.

What does it mean to be “invisibly ill?”

If you are invisibly ill, usually that means that people can’t tell by looking at you that you’re sick. You don’t have a broken arm, a wheelchair, an insulin pump, or any other clear indicators showing that you aren’t well. Some conditions that fall under this category are: chronic migraines, lymes disease, depression, autoimmune diseases, or postural orthostatic tachycardia syndrome (POTS).

I am currently living with POTS, which is a condition that frequently causes me to become very dizzy and faint when doing common day-to-day activities. I also have celiac disease, anemia, and temporomandibular joint dysfunction.

Being ill while still “looking fine” is something that can be lonely and difficult. Many of us with chronic illnesses are tired of the typical, “You look just fine,” “I’m sure you’ll get better soon,” or, “You’re still sick?”

Don’t get me wrong, I know that people mean well. People care and they want to do everything they can to help you, and I have experienced an overwhelming amount of support that I will always be thankful for.

But for those that may be wondering, here are some of the struggles that we often encounter:

1. Many of us have trouble talking about our illness.

To be honest, I try to avoid talking about my illness at all costs. I don’t want to be perceived as weak. Prior to being sick, I was an avid rock climber, hiker, and traveler. I’d rather be seen as the climber girl than the sick girl.

Only one or two people at my work even know that I have POTS. I work a desk job, so I am able to sit down all day doing my work, which usually is OK for me. Sometimes I just want to get my mind off of my struggles, so I don’t talk about them very much.

I usually don’t want people to feel bad for me either. Sometimes not talking about my illnesses to others does leave me feeling lonely and sad. I know that I should be more open about it, and I’m working on that.

2. Sometimes we’re embarrassed.

Just the other day, I was walking in Home Depot, and I got very dizzy and had to sit down. I have trouble going shopping sometimes because being on my feet makes me light-headed. I saw several elderly ladies walking past me, and thought, “They’re doing better than me.”

I’m 22 years old and I struggle to do things like going to the store. Because of how active I used to be, that can be embarrassing. I have a tendency to hide my struggles because it makes me feel uncomfortable to share them.

I recently got a handicap pass, which has helped me lots on really bad days. I know that some people probably look at me and think, “She’s just fine, why is she parked there?” I totally get that. I used to do the same thing! Yet, I’ve learned we should never judge because we don’t know what people are going through.

3. It can be difficult to accept help.

I am definitely stubborn. I like to do things for myself, and it can be hard to accept help when I need it. This is something that I’m getting better at. I’d much rather be on the other end… doing the helping for someone else.

But I have to remember that I would be happy to help someone in my situation, just as many are happy to help me. I am learning to humble myself and to not worry too much about what others think.

4. We feel like we’re missing out.

I think this has been the hardest part for me. When I see people doing things I love, such as hiking, climbing, or biking, I am happy for them, but it reminds me of how I used to be able to do those things without worry. It’s hard not to feel sad. I miss the freedom to be active and to be strong.

I hope and believe that I will be able to get back to these things I love in the future. And I still try even if I end up feeling too sick or faint. I guess that’s what matters, right?

5. Doctors and modern medicine have their limitations.

Even when we’re doing everything we can to feel better, sometimes it isn’t enough. For example, if you look up POTS, you will find that things like drinking more water, eating more salt, wearing compression stockings, and taking medication help alleviate symptoms.

When I was first diagnosed, I was sure that these things would all work and I’d be cured in no time. I quickly found that this was not the case. Doctors know very little about the condition and how to treat it, and so there is a lot of experimenting involved in trying to treat POTS.

I know many other conditions are similar, and it is frustrating when there is no medicine or cure for you.

Though living with a chronic illness has been very difficult, I feel I’ve grown a lot from it. I’m learning to stop caring what other people think, to fight the urge of comparing my situation to others, to not feel sorry for myself, and to focus on my health.

I do not write this article looking to complain or to find pity, but more to spread awareness to others about what it’s like to have a condition like this, and to bring hope to those that are struggling with similar trials.

I’d like to encourage you to not give up and to find joy in the small victories. Just last week, I went up into the mountains to have a campfire, and it was wonderful. I felt incredibly blessed to be able to experience nature in a way that didn’t make me feel sick. I took in the beautiful views and the fresh mountain air, and I felt happy.

Look for those little things that make you feel alive and happy. Having an invisible illness doesn’t have to be miserable.

Follow this journey on Gone to POTS.

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Studying is tough. Studying while dealing with chronic illness is even tougher. I’m fortunate to even be able to study, but I still need to manage my energy – or spoons – in order to maintain balance. Here, I’m sharing some tips which have helped me deal with some of my symptoms:

1. Stay hydrated.

It may sound obvious, but it is so important. Leaving an empty 200-ml. glass on a bookshelf doesn’t count! I try to keep a large, refillable (to save the environment) water bottle on my desk when I’m studying. In particular, I love Contigo water bottles because they store loads of water while remaining lightweight – making them easy to carry. The more water the bottle can hold, the fewer trips for refills necessary. This conserves energy, which is especially important if you’re studying while chronically ill. In addition, fewer trips limit possible distractions.

 

2. Find the specification.

Hunting down the specification for your subject and exam board can help you avoid unnecessary work. Textbooks can contain extra material which will never appear on an exam paper, so just using them can waste time, resources and – most importantly – energy. By having the specification, any ambiguities about the material covered can be clarified. Knowledge of the specification can also make it easier to catch up on missed lessons to avoid slipping behind.

3. Watch where you’re sitting.

Ensure you’re in a comfortable position. I used to get back pain from revising on the floor rather than sitting at my desk! Remember to readjust to avoid stiffness and try to stay as active as possible outside of studying.

4. Keep notes clear and concise.

Beautiful notes may look fantastic in your Snapchat story; however, they take a lot of time and might not contain all the necessary information. This could mean there is an over-expenditure of time and energy when simpler notes would suffice. This becomes especially true the closer it gets to exams. Trying to write out gorgeously illustrated guides to each scene in “Romeo and Juliet” the day before an exam will not work! It just causes burnout. Writing up quote maps for themes and characters would be less pretty but far more effective.

5. Make a plan but remain flexible.

Planning tasks in small increments can help to conquer obstacles while studying. So, rather than putting “Biology” on a study plan, put “Biology: structure of a human cell vs. structure of a plant cell: comparative bubble map, 20 minutes.” This means that what, how and for how long a task needs to be done is immediately clear. This is highly beneficial: it ensures all work is done to the specification as well as helping if brain fog strikes. However, flexibility must be maintained. If rigidity remains, then a flare-up could be brutal to the regime of studying. Including rest breaks (20 minutes of every hour) can help to ease this. Rest days should also be scheduled to avoid burnout. Another way to plan is to use Eisenhower’s Urgent/Important Principle, which aims to evaluate the relative priorities of tasks.

6. Listen to foreign or instrumental music.

When I get brain fog while studying, I find that music helps to drown out some of the static. However, listening to music in your native language can be incredibly disruptive. I used French music when I wanted to hear someone singing but didn’t want to get caught up in the lyrics. Maître Gims, a rapper, was particularly fun and easy listening. There were also days when the sound of anyone’s voice – no matter which language they were speaking – hurt my head, but I didn’t want to study in silence. Then, I used classical music. There are so many freely available playlists on apps like Spotify. Classical music is also useful as it gives the impression that you are incredibly erudite!

7. Listen to white noise or other repetitive sounds. 

The use of white noise is another option; white noise generators can be bought online or the sounds can be found on YouTube. I tend to use white noise when I have painful headaches which are worsened by unexpected sounds. If white noise feels too emotionless or clinical then waves, storms or rain sounds are other options. They can “cushion” any other noise. This helps to avoid distractions.

8. Get online.

It is shocking how many online study resources are available. For example, TES is an online community where teachers share resources; fortunately, you don’t have to be a teacher (or even say you are one!) to make an account. Thousands of worksheets, revision notes and lesson plans are available. This can save time, but remember that merely reading others’ notes will not help you to fully understand the course material!

Twitter also has a thriving network of lovely teachers who answer queries and share their materials in order to help students. If you want to maintain a social media study-life balance, it may be worth creating a school account to follow these teachers on and then keeping your personal account for memes.

YouTube is also a fantastic educational resource. Students and teachers post videos covering the specification, going through mark schemes in detail and sharing their exam technique tips and tricks – this is especially helpful if you are not in class often, as you can gain a similar learning experience. An extra tip: when on YouTube, watch videos once on double speed with captions, then skip to places you didn’t understand on single speed – it functions as a great review of work!

9. Find out what your educational facility can do for you.

Whether it’s extra time or rest breaks in exams, a private room to work in or a “time out” card, schools typically have options available to those who ask. In the UK, schools are legally obliged to treat disabled students equally under the 2010 Equality Act (similar protections exist in the USA) – knowing your rights can help, especially if schools are reluctant or simply do not know how to help.

10. Don’t be afraid to ask for other help.

Teachers and support staff are there for a reason: to help you to learn. If you feel overwhelmed, communicate with them (writing an email often makes this easier as it is recorded – which can be very useful when dealing with a difficult teacher).

11. Remember that health is more important than studying.

Health, whether mental or physical, should not suffer as a result of studying. Take breaks, look after yourself and remember that grades will not impact you forever; there are always alternative routes.

This post originally appeared on A Side of Spoons.

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Thinkstock photo via elenabs.


To the doctor who finally believed me,

As a young female at the tender age of 15, I had the world ahead of me with no idea that life could be full of struggle. I was a freshman in high school, in the best shape of my life, doing the best I ever had in school – when in a split second my world began to shatter. It was November, and I was on the phone with a friend while laying in bed when I realized I had to use the bathroom. When I stood, the room went black like I was stuck in a tunnel and had no way out. I woke up on the flood of my bedroom with my parents surrounding me. This wasn’t the last time I would ever faint.

My parents didn’t think anything of it. They got me back in bed and set me up with some water thinking the cause of this episode was simple dehydration. However, when two days pass and I still couldn’t sit up without being dizzy we went to my doctor. While there I had my first electrocardiogram, which showed an abnormally fast heart rate and I was referred to a cardiologist. By the time I saw this doctor I had fainted over 30 times and had been to the emergency room many times with no answers. Without running a single test, this doctor dismissed me. My parents were told I wanted attention and if they just didn’t pay attention to me when I fainted, I would stop.

I wish that was the case, but the fainting continued. We saw a second doctor who at least agreed I needed some testing done. However, when all the tests came back “normal” aside from tachycardia (that fast heart rate) they too thought I was making it up. They suggested I needed therapy. Honestly, if I was them I would have thought I maybe I was making it up too. Who hopes for something to be wrong? The doctor would come into the room and say another test was normal, that was another thing ruled out, and I would lose it. Of course I didn’t want to be sick, but I wanted validation because even I began doubting myself.

I spiraled into this depression at age 15 because I couldn’t stand without fainting. Was I making it all up? Was there really anything wrong with me? I felt guilty for making my parents take me to doctor after doctor who all told us the same thing; there was nothing wrong!

Finally, in February, my parents pulled out their big guns and took me to a big hospital out of state and promised me that even if nobody else believed me, they did. They promised me they would keep searching until someone listened – and eventually someone did. I remember I hated doctors at this point. I thought nobody could ever help me. I thought I would be living the rest of my life constantly fainting when my body changed positions. Until my new cardiologist mentioned postural orthostatic tachycardia syndrome (POTS).

He explained to us what POTS is and that I wasn’t making any of my symptoms up. He did a poor man’s tilt table test on me in office, which consisted of taking my blood pressure and heart rate while laying, sitting, and standing and watching what happened. Then I was sent to a lab to have an actual tilt table test which was just a fancy version of the test done in office.

Just 20 minutes and two tests later spent with a doctor willing to listen, and I was diagnosed with postural orthostatic tachycadia syndrome. It is a form of dysautonomia which is a dysfunction of your autonomic nervous system. Basically the system that controls everything you don’t have to think about. When I stand from a seated or prone position, I have a lack of blood getting to my brain because of poor blood volume and my bodies inability to properly constrict blood vessels. This causes me to faint. Everybody has this feeling sometimes when they stand too fast or are standing for a long time when they are hot. The problem is, my body feels this way all the time. Medication, proper hydration, salt therapy, and light exercise has helped tremendously. Sometimes I can go months without fainting, which is a miracle from where I started.

A girl in a hospital gown and bed, with a dog Snapchat filter on her face.

Since my POTS diagnosis I’ve received many other chronic illness diagnosis which have altered my life even more so than what my POTS did, but I’ll never stop fighting. My doctor has told me that I had many things going against me, which made it hard to get my diagnosis.

1. I am a female. Females are less likely to be taken serious from medical professionals due to what in the past was “hysteria.”

2. I am young. People think I can’t possibly feel as bad as I claim I do because at the time I was only a teenager, and well, teenagers just don’t get sick right?

3. My illnesses are all invisible. If someone isn’t trained to see what is going on with me, they simply can’t. People like to believe what they see, and it’s hard to believe what can’t be seen. My doctor called this the “trifecta.” Because of this, young woman have the hardest time finding answers.

So thank you doctor number five. I never thought I would have a life because I couldn’t even stand. You believed everything I said and you gave me my life back. You helped me get back into sports and school and “normal” teenage things. You were there through every high and low and I can’t thank you enough. We need more doctors in the world who listen and believe. We need more who are willing to try multiple treatments until one begins working. We need more doctors like you.

Love,

Your patient

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Before I became chronically ill, I had the job that I dreamed of, I traveled to the places I wanted to visit, I went out whenever and wherever I wanted, and I made many friends and went out with them. I did all of these things without a second thought, without worries, without fear that one day I can’t do them anymore.

When I became chronically ill, I started to have this understandable fear of missing out (FOMO)… missing out on seeing my friends, on jobs opportunities, on visiting family members, and on traveling to new places. Basically missing out on everything I used to do, missing out on everything a young adult usually can do in their 20s, but I can’t do.

This a real fear to any chronically ill person, and it’s an awful feeling – especially for young people. Your 20s is the time when you have to take care of yourself and build your future, and also to have the time of your life. But, when you’re ill, everyone around you is living their life and working on themselves – and all you can do is stay at home and do nothing and watch life pass you by.

I would like chronically ill people like me to know that even if we’re missing out on many things, we still can live and enjoy other things in life. We can enjoy things we didn’t pay attention to before. Everyone of us is different, so everyone has their own things that they can still enjoy and able to do.

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Quick! Name a body modification your parents would never let you have. Is it a tongue piercing? Lip? Nipple? Other… places? What about mid-sternum? What about a weird, alien looking egg that sits right under your skin?

I, for one, see my port-a-cath not as an alien egg – but as a kind of Tony Stark-esque reactor.

Every week, three times a week, I stab myself in the chest with a needle. Monday, Wednesday, and Friday. I receive 1.5 liters of Saline fluids via a pump I carry in a cute holographic backpack. When the pump is going, I tell people I’m a robot getting my robot juice. They laugh, I sigh because it’s easier than explaining how the Saline fluffs up my low blood volume and keeps me from fainting every time I stand up because as soon as they hear “heart rate increase” they think it’s a heart problem.

Psst… it’s a neurological condition.

So here’s my two cents to anyone looking into, living with, or about to receive a port-a-cath.

It will change your life.

No longer will you be tied to a pole for over four hours as gravity slowly pulls the liquid into your veins. You’re free to walk around! That magic pump will be your best friend.

When/if you learn to access yourself, you’ll feel a bit unstoppable. I mean, who wouldn’t? You stick a needle into your own chest! (Don’t forget that you’re only human.)

The writer standing with a backpack on, wearing a port.

Tegaderm and all other adhesives are evil, apologize to your skin.

Don’t pull off your surgical glue… even though it’s super satisfying, you could pull open your healing scar. Just gently itch around it and trim any edges with nail scissors or nail clippers.

And finally, if a little kid asks what the tube coming out of your shirt is… say you’re Iron Man.

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Being diagnosed with postural orthostatic tachycardia syndrome (POTS) just over a year ago was a shock. I entered the doctor’s office assuming I was being silly and I left with a diagnosis, a help sheet, and so many questions. I remember frantically searching the internet for the life expectancy of someone with POTS (spoiler alert: it’s the same as, or even higher than, the typical average – depending on which articles you use). Hours were spent trawling through scientific journals and charity resources, as well as some “fake news,” to discover what caused POTS and how I could fix myself. Unfortunately, it seems I can’t.

There isn’t a surgery or a course of treatments or a quick-fix medication to take. When I discovered this, my heart dropped through the floor. How could there not be a cure? Was I just supposed to give up any chance of the life I had anticipated having? Utter despair.

However, after moping and crying and hunting for a magic medicine which would heal me, I realized something. I was flicking from tab to tab on my browser, reading page after page, but I wasn’t understanding how POTS impacted me. I didn’t take the time to consider my worst symptoms and practical measures which could improve them. By ignoring the suggestions for improvement and focusing on the onslaught of new information and the minuscule chance of a cure, I was robbing myself of the opportunity to improve – even slightly. My outlook changed immediately. I re-visited websites and noted down their tips for managing POTS instead of the most common symptoms. Rather than complaining in Facebook groups, I asked what successful adjustments the members had made and experimented with them.

I’ve discovered that there are changes I can make to minimize my symptoms – so that, rather than being greeted with static upon standing up, I now just wobble.

It hasn’t been easy. Like the thorny devil lizard, which hydrates through its skin in sweltering temperatures, I’ve had to adapt in order to cope. I now drink more than three liters of water each day. In my bag, there’s now a packet of crackers to increase my salt levels if necessary. Utilizing the spoon theory allowed me to explain my energy levels to family members; I could tell them how I felt without it being misconstrued as simply “tired.” They no longer had to attempt telepathy to understand how much more I could cope with.

Sometimes, life gets in the way of my carefully curated management plan. Due to a late night, being too rushed to drink my water, or merely chance, I have days when I regress to my earlier self: too afraid to stand up, too frightened to look past the statistics and to just try. On those days, I revert to doing whatever is necessary. I hide away from the world. However, I know that I can – and will – emerge from the dark and return to relative normalcy. Adjustments have been made. My life may not be what I had anticipated, but it is still so worthwhile.

I know that I may not ever get better. I also know that I can improve more than I thought possible.

Follow this journey on A Side of Spoons.

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Thinkstock Image By: Dreya Novak

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