sad girl with hand on head on black background

I want to start this post off by saying I know most of the time people are only trying to help, and that these words come with the best intentions. However, that’s also why I’m writing this, because while things do come with the best intentions, they can be really hurtful, too.

1. “You’re being over-dramatic.”

This is usually in response to, “This isn’t going away.” Now I know there are lots of ways I can manage how I feel. I know that for some people, it does go away, and that might happen for me. However, for the foreseeable future, this is the reality I am living with, and I find it easier to accept that it isn’t going anywhere. This isn’t like a cold or a bug that’ll be gone by next week, this is something that I need to take into account when choosing jobs, looking at houses, planning how to do my shopping this week. If, in the future, it does go away, then that’ll be amazing, but for now, for me, I prefer to consider that it’s here to stay, so I can work around it.

2. “Aren’t you just unfit? Or lazy?”

Yes, I get exhausted when I brush my teeth. My heart likes to think it’s just run a marathon. And again, yes, light exercise can help alleviate postural orthostatic tachycardia syndrome  symptoms, and that is something I’m working on. I am definitely not unfit. And although I am lazy sometimes (isn’t everyone?), I am not a lazy person. I would much rather walk than get the bus. And weirdly, I would actually love to do the washing up tonight. I’m doing my best, my body just doesn’t keep up.

3. But you can do *insert task here*?

This is usually to do with having almost finished my degree, or to a single day of activity. First off, my degree. I attend three hours of lectures a week, and sometimes I’m too tired to even do that. I keep up with everything because I can study lying down. I’ve learned to work in bed because that’s what I have to do. A day of activity, shopping or a party? Again, I can manage short bursts of activity, as long as it’s not a bad day. But you see me for those few hours, where I force a smile, hide my discomfort. What you don’t see is that evening, and the next day, when I’m stuck in bed, barely able to sit up because I pushed myself too far.

I do want to add, I’ve also heard some amazing things recently, my two favorites being:

1. “What can I do to help?”

2. “So, what exactly is POTS?”

It sounds cliche, but the simple things are sometimes the best. Acknowledging that I’m struggling, and passing it over to me to explain further.

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This post was originally shared here.

Thinkstick Image By: KatarzynaBialasiewicz


POTS and I have a complicated relationship.

Here’s the thing: I’m an over-committer. Like, the kind who is utterly convinced that there are infinite hours in a week and continues to take on more things until they crush me. I’ve done this since before chronic illness, when I could bounce back quickly.

I don’t particularly enjoy or prioritize looking after myself. So POTS comes around going, “Hey man, if you don’t chill the heck out then I’m going to do it for you.” I didn’t chill out. POTS kept its word.

And that’s all really funny except for the fact that POTS forced me to face head on the fact that I absolutely define myself as someone who loves to learn and is good at it.

I was diagnosed in December, just when holidays started. I spent the summer looking after myself and listening to my body and generally making peace with chronic illness. I get a lot better. So much better, in fact, that I think it’s a good idea to do a full-time course load.

OK, obviously this was not wise, but I did one subject per semester last year and I felt like a failure. My identity is wrapped up in the ability to push myself so hard I almost crack and still achieve great results. I achieved great results last year. I passed a course I thought I’d fail, and I received a distinction in the semester I got my diagnosis. I didn’t care. It felt like nothing. It also extended my degree by a year. Anything less than three subjects per semester this year would extend it another.

college student laying in bed and reading a book for class

And I was so determined to prove to myself I could do this. If chronic illness was going to exist, I wanted it to exist on my terms. It’d be the inspirational backing track to the montage of my university career. I’d graduate on time, with excellent grades, in spite of illness.

From the beginning, brain fog hits me hard. I can’t concentrate in lectures, I can’t remember what’s been said when the slides move forward, I can barely connect the points the lecturer is making. Never mind, I tell myself, lectures are recorded and I’ll make time to watch all of them again. My fatigue triples, and I start to get insomnia. I deny the fact that these things make my plan next to impossible.

Week two rolls around, and on the Monday, I faint in a lecture. In line with my determination, I lay there for a bit then get back up and keep working, ending the day by catching the bus home (which includes a 15-minute walk). And then I’m hit with an actual inspiration story.

Amy Cuddy, whose TED talk I’ve been showed umpteen times. Who sustained a brain injury that dropped her IQ by almost 30 points, when her identity was wrapped up in her intelligence. And whose message I selectively remembered, apparently, because one line stared me down when I heard it again. “I finished my degree. It took me four years longer than my peers.”

So I dropped a course. Actually, I cried on the kitchen floor, then I dropped a course.

I’m not sure when I’ll graduate, or if I’ll get the marks I think I should. I still don’t know if this is ever going to get easier, when I’ll learn to be kind to myself or exactly how much of my ability this illness has taken.

But I know I’m going to be OK, whichever form that takes.

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Being able to tell my story has been a sort of relief valve, allowing me to talk about the frustrations of a misdiagnosis and then living with an “invisible” illness on a daily basis. It is comforting to know I am not alone struggling through each day, yet my heart breaks for each and every person and their own personal situation living with such an illness. We all wish we could leave so much of this behind us. Yet we are a support system for one another, because whether we like it or not, our lives have changed, and we have a new “normal.” And that continues to change often, even daily!

My Body Has Changed – I Have Not

Personally, it has been surprising to see so many friends drop away (and even a spouse in my case) when you become ill and cannot do the things you used to. It is frustrating because I am the same person on the inside as I was before. The thing is that health issues can suddenly affect anyone, and perhaps it is a defense mechanism to not think about it and the fact it could happen to anyone. The other part about telling my story was the fact I was able to share my difficulties with our medical system and the struggles I had to get a proper diagnosis and to get doctors to believe what you are telling them. I am still paying for their misdiagnosis, trying to get off medications they had me on that I did not need to be put on to begin with, but which my body has now become reliant upon, as well as the needless thousands of dollars that were spent for nothing.

No Easy Answers

I wish I had an easy answer for those struggling with so many different “invisible” illnesses, but there aren’t any. This type of project (“This is Me”) at least makes people aware that we are out there and maybe will get others thinking about it in a new way. It is too easy to take good health for granted until it is taken away from you. To leave a career and activities you loved and then have people leave you behind is very difficult. It is essential to create new things in your life to make you feel like a productive part of society, no matter how small those things might be. In my case, dysautonomia/POTS (postural orthostatic tachycardia syndrome) has been the culprit, but I fight every day not to let it win over my spirit and the values I hold dear. Some days I win and other days not so much, but we have to keep on fighting. Thank you to the Invisible Disability Project for letting us share our experiences!

By: Dan Peterson

This is Me is an IDP educational media project that disrupts the silence around invisible disabilities. If you would like to participate, sign up here.

See more from the This is Me project here.

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One Sunday morning at our small-town church, a woman asked me how I was doing. This is not an unusual occurrence, so I gave her the usual answer — “about the same.” I’m not noticeably worse, and I’m not noticeably better. “Well, I’m praying for you,” she said — which is also not unusual.

I thanked her and told her I appreciate it because, really, I do. I so appreciate the time people take to pray for me — the fact that they think about me and care enough to talk to God about me is so super cool, and I appreciate it so much. So, I said thank you and expected her to go on her way, like people usually do. But then things started to get a little unusual.

She asked if she could hug me. OK. And then she asked if she could pray for me right there. “Uh, sure…” I said. I mean, who am I to tell somebody they can’t pray for me? Like I said before, I really appreciate it, so I wasn’t going to stop her.

She put her hand on my shoulder and said a quick prayer. She asked that God would “miraculously heal” me.

And I was so, so uncomfortable.

I’m sure the intentions behind her words were good. After all, who wants to see a person sick and in pain? We want people to be well, right? And I know people pray for me to get better. I’m 98-percent certain my grandparents pray for my healing on a daily basis. But those words — “miraculously heal her…” — make me feel uncomfortable. They make me feel like something wrong is being said. I know there’s no wrong way to pray, but there are wrong things to pray for, you know? For example, things that might be outside the will of God.

Here’s where things get messy.

I’m not sure it’s God’s will to “miraculously heal” me. I mean, if it was, wouldn’t He have done it all ready? If His plan is to “miraculously heal” me, then why is He letting me suffer for so long? Hurry up already, God! I’m not having a lot of fun here! I know You can. You made the blind to see and the deaf to hear. You even raised the dead to life! Certainly my problems aren’t too big for You! So what’s the hold-up?

The hold-up is I don’t believe God works that way. God doesn’t make everybody all better. As my mother put it, “If He did, there’d be a lot fewer funerals!” I believe God makes people right for the job. And if you take a quick look through your Bible, very rarely does that mean He makes people strong and brave and competent and powerful. “But what about Samson?” you say. “But what about Moses?” I reply. “The man with a stutter and a reluctant heart? What about Ruth, the foreign woman in a strange new land? What about Gideon, the smallest person in the smallest family in the smallest clan in the smallest tribe in all of Israel? What about Saul, the one hiding among the baggage? What about Ester, the timid girl plucked from obscurity and planted in a palace? What about Paul, the one with an ailment no amount of prayer would cure? What about person after person who felt broken and weak and afraid? What about all of them?”

I feel like when people talk with me about my illness, the only solution they see is a “miraculous healing.” I get a lot of pity. I get a lot of, “I’m sorry.” I get a lot of “I’m praying for you!” And that’s fine. My current situation kind of sucks. I’m sorry it’s this way too. I’m grateful you’re praying for me. But what I don’t get a lot of is, “Wow, I wonder how God’s going to use you!” And I find that so funny because if we go down the checklist of what it takes to be a Biblical hero, I pretty much fit the bill!

Follower of God? Check.

In a dark place? Check.

Feeling confused and terrified? Check.

Feeling weak and powerless? Definitely check.

But here’s the deal: None of this actually makes being sick any easier. Ask any God-fearing sick person and they will tell you it still sucks. But it gives me hope — not that I will be miraculously healed but that I can and will still be used. Because I don’t believe God uses us in spite of our weaknesses. I believe He uses us because of our weaknesses.

I don’t know what God’s plan is. Nobody knows. We keep our eyes and ears open to try to figure out what He wants us to do next, but nobody knows what the end product will be. Nobody can see that far. So I don’t know what God’s plan is for my life. I don’t know how He’s going to use my illness. I don’t know how in the name of sunshine and rainbows good things will come out of this. I don’t know. But God has given me a peek. He has shown me that, even though I can’t do much, I’m helping others who are struggling. He’s shown me that He is using me for good, even if I can’t always see it. He’s shown me my weaknesses and my experiences, though difficult and often overwhelming, can and will be used for a bigger and better purpose. This is very good encouragement.

So when you pray for me, go ahead and continue to pray for my healing — I would love to be healed! I would love to not have to deal with all of the horrible stuff I simply call my daily existence! But do not stop there. When you pray for me, pray that I will be strong–because life is very, very hard. Pray I will keep running the race set before me. Pray I will keep my eyes above the waves. Pray that in everything I say and do, the light and love of Jesus Christ will shine on those around me. Pray, above all, that I will submit to the will of God, even if it means I am sick for the rest of my life.

Pray for me, my friends, but do not put God in a box — and do not confine my existence to needing “miraculous healing.”

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I’ve struggled with what I now know are POTS (postural orthostatic tachycardia syndrome) symptoms for as long as I can remember. The first time I fainted was when I was 14 – over seven years ago. My head always hurts, and I’m always shattered. Not just tired at the end of the day, but completely exhausted all the time.

I knew this wasn’t normal, but I never knew there could be something behind it. I always thought I was just weak, pathetic, useless and complaining about nothing. Just another lazy student who can’t be bothered to get a job, let alone do all their schoolwork. I went through every day fighting to keep up, despite how exhausted I was. I felt sure I was just making a fuss out of nothing and thought I’d eventually grow up and stop being a “wimp.” I’d completely burn out at least once a week, push myself through when I knew I should stop and be unable to move the next day. And still I’d get up and move, because I thought there was nothing wrong.

When I discovered I had POTS, there are no words for the relief I felt. I’m not weak. I’m not making a fuss. What I’m feeling isn’t normal, and while it probably isn’t going away, I can manage it, I can control it and I can feel better. But more importantly, I can finally stop beating myself up. If I need to rest, I can. I know I’m doing the best thing for me and I’ll be more likely to be able to try again the next day. If I’m exhausted, it’s most likely not because I’m lazy, it’s because my heart has been going 150 bpm all day and I can’t cope any more.

Of course, I’m scared as well. When I thought I was lazy, I thought if I just put my mind to it, it would go away. And that not being true is scary.

But the relief is much more. Speaking to people about this, it’s really reassuring to hear that they didn’t think I was being lazy, even before I told them what’s been going on. And whilst I’ve been doing my best to keep going and appear “normal,” it’s nice knowing that when I do have a “no spoons day,” people won’t judge me and I can take my time to rest and recover.

This post originally appeared on POTS & Spoons.

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Thinkstock photo via AndreyPopov.

I have flown many times post my diagnosis with chronic neurological lyme disease, and none of those trips were ever a walk in the park. At the time, I wasn’t at a place to take my lyme diagnosis, or my impending postural orthostatic tachycardia syndrome (POTS), diagnosis into my own hands. I made do, roughed it through the airport, hoping there would be something I could kind of eat among the local restaurants, knowing I still likely wouldn’t feel well. And I carried far too much with me aboard a plane to avoid outrageous luggage fees.

Now, I rethink each trip, and prepare with POTS in mind. What is going to give me the absolute best chance for success? Traveling is a destination, hopefully to something enjoyable, but regardless, a destination that requires a certain amount of energy and mindfulness.

My seven tips to having a successful flight with POTS:

1. Wear a Scarf

Traveling in layers is extremely important on flights, considering you never know if you are going to be too hot, or too cold. However, one thing that is harder to avoid than temperature is smells. For many with POTS, smells of any kind can become unbearable. I always make sure I have something handy, washed in my own unscented detergent to help with any smell that comes my way!

2. Compression Tights!

I would highly recommend investing in a pair of compression socks or tights. Compression tights allow blood to not pool on those long flights, which can easily make our symptoms sky rocket. I would never dream of flying without some type of compression, it helps me out substantially!

3. Eat Ice Chips

Nausea is a very common issue with POTS gut issues. Although there is not a lot of scientific evidence for natural remedies for nausea, many go to peppermint or ginger to help. I rely on flight attendants, knowing they will always have ice chips handy. They hydrate, distract and help my pesky stomach!

4. Hydrate, Hydrate, Hydrate

Not properly hydrating is one of fastest ways to exasperate symptoms. Make sure you are hydrating with several liters of water the day before. Drinking a liter of water the morning of is important, and my first stop post security is always the shop for water.

5. Salty Snacks

Salt before your flight, during, and after. Do not rely on what the airport may offer, bring your own snacks! I have found small packs of olives are the best solution for me. If you can tolerate grains, pretzels, or chips are another good option. Salt is very helpful to our low blood pressure stabilized.

6. Last on, Last Off

To avoid standing for too long, I occasionally ask to preboard, but more often than not try to be one of the last on the flight. Similarly, delays are common departing the flight, so I rest and exit towards the end to avoid standing.

7. Bring All Pills With You

This one is a no-brainer, but in case your luggage gets lost, or to avoid missing a dose while you are on the flight, always travel with your pills!

The point is to find what works for you. Do your research, know your condition, and never shy away from what is going to help you have a successful flight.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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Thinkstock Image By: ZinaidaSopina

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