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The Relief I Find in Sharing My Story After Years of Misdiagnosis

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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To Those Who Pray for Me to Be 'Miraculously Healed'

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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The Relief of Discovering My Exhaustion Is a Symptom of POTS

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.

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7 Ways to Help Make Flying With POTS Easier

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

Present, gift. Close up of female hands holding small gift.

What POTS Took From Me and Gave Me In Return

It took me close to five years to finally get a diagnosis of postural orthostatic tachycardia syndrome (POTS). At first getting the diagnosis was a huge relief, it wasn’t all in my head, I wasn’t imaging it. Then the panic set it, this is forever and it isn’t going to go away. POTs has taken a lot away from me, but it’s also given me a lot, too.

POTs took away some of my hobbies, I can no longer competitively show my horse, but it’s also given me a newfound appreciation for swimming which is something I both love and can do.

POTs made me aware of who my real friends were and who left when things got hard. It has also pushed me into making new friends. Friends who appreciate me for me and are okay when I don’t have the spoons to do something.

Two female friends wearing sunglasses, smiling at camera.

POTs took away my ability to comfortably walk around the mall, but has also shown me that there are people in my life who are willing to sit with me until I can start again.

POTs took over my body but it also has made me strong at reading my warning signs and given me the ability to properly advocate for it with my fantastic team of medical professionals.

POTs showed me how much my family really loves and cares for me.

It’s true that POTs has taken more from me than I ever imagined, but what it has given me in return is truly irreplaceable. Although this life has its challenges, I wouldn’t trade it.

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Thinkstock Image By: Avosb

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How I Arrived at My Dream Job Despite Battling With Illness

“Choose a job you love, and you will never have to work a day in your life.” — Confucius

This was the plan when I decided I was going to go to fashion school. However, one of the biggest challenges when faced with chronic illness was knowing it would be difficult to find a job in fashion that would accommodate my needs — a “sit-down” job that is rewarding, exciting  and pays well — and I would have to accept whatever I could find, even though I’ve never been one to settle. What you may not realize is that it’s hard to get a job in fashion without prior entry-level experience in retail – which is nearly impossible when you’re unable to stand for long hours, can’t do heavy lifting and using ladders is out of the question (due to postural orthostatic tachycardia syndrome, or POTS) — and you were denied the right of passage of a “first job” during high school due to a low white blood cell count (see my article on thyroid cancer for more on this).

POTS and thyroid cancer disqualified me from a lot of things. It can be incredibly isolating when you’re sitting on the sidelines, but what I loved about social media was that I could still be my bubbly self, as it allowed me to have the interaction with other people that I thrived on, even on days when I couldn’t leave my bed. As my “dream job” evolved, this made getting my master’s degree in PR and journalism all the more worth it.

Unfortunately, I wasn’t the only millennial vying for a remote job in this competitive field. When I dealt with rejection, what I did might surprise you — I refused to give up on my dream. I joined LinkedIn, added valuable connections as though my life depended on it and, sure enough, opportunity found me, and what followed changed my life.

Soon I was “discovered” by Brian, who was looking for someone with experience in my field to bounce ideas off of. I was eager to help and full of good ideas – my hard work and dedication made me indispensable. I became the communications director for Brian and his business partner Matt’s company that they didn’t realize they needed — and to me, this was likely the opportunity of a lifetime. Neither one of us knew at the time that this would be my actual dream job. It gave me the autonomy to carry out my creative vision, while enabling me to work remotely, sometimes from the waiting room at the doctor’s office. But best of all, I was able to use my expertise to create a lifestyle brand and grow our following, while supporting causes I believed in.

But opportunity did not stop there: as I garnered quite the reputation as the local social media guru, I’ve realized even bigger dreams. I had found my niche and I eventually went on to lay the foundations for starting my own business as a consultant, advising new brands on developing their image and expanding their following.

It was through my friends, Brian and Matt, that I met Ben, and everything came full-circle when I jumped on board with a cause that hit close to home — I knew for sure this was my true calling. Ben created a cosmetic company, Amend, which is geared toward men struggling with skin imperfections. This struck a nerve, as I remembered what it was like to feel self-conscious about my thyroidectomy scar — my preoccupation with these feelings had begun to impose an obstacle that was getting in the way of enjoying things I had been looking forward to and from being myself.

In fact, the first time I went out without the bandages was prom — I mentioned this to my makeup artist and she did her best to conceal my scar. I was instantly uplifted and the anxiety went away. But what if I had been unable to ask for what I needed? As a woman, make-up is accessible to me; I could not imagine what it would be like for a guy to feel out of place asking for concealer — since there is, of course, a stigma attached to men’s skin care, which is an unfortunate drawback for many.

You see, this particular experience played a role in choosing to pursue my fashion degree. While it might seem almost unbelievable that my outward appearance had such a profound affect on my emotional and physical well-being, the power of the mind is a complicated thing to understand, as those who are battling chronic illnesses know all too well. From there, I set out to establish Ben’s brand as a source for fashion tips, motivation, skincare topics, etc., because to me, confidence is achieved at different levels: mind, body and soul. It has always been a dream of mine to give back, and this allows me to give others something priceless: self-confidence.

I assumed my chronic illnesses would get in the way of my dream — but now I realize I never had to let go of it after all. To anyone else facing a similar struggle, don’t get discouraged if you can’t find the job you’re looking for. Sometimes you have to find a problem and offer the best solution for it. I found a demand for my skills and made a business out of it. Even though my path was rather unconventional, I got there. And everything fell into place.

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