The Problem With Telling Patients They Will Grow Out Of POTS

Telling a young person with a chronic illness that they will grow out of it sounds like fantastic news. With POTS, it is a trap that is easy to fall in. It feels lovely to give someone hope and good news who is obviously suffering, but when it is false hope it can cause some serious issues. It may sound strange, but when we are waiting for something horrific to end we stop actively living our lives. Everything becomes about what will happen after this terrible phase in their life. “I’ll finally start dating once I grow out of it.” “When I grow out of it I can have a social life again.” “When I grow out of it I can finally travel.”

As many as 1 in every 100 teens has POTS. Sometimes these teens grow out of POTS in ways adults seldom do. I was diagnosed with POTS when I was 18. Because I was right on the borderline it was assumed that I would grow out of POTS. I had at least 5 different doctors inform me I would grow out of POTS.

As a result, I stopped living and just survived, always waiting. When people are just living out the time in their life waiting for when things change very little joy enters their life. Waiting leads to not seeking out the things you love and not connecting to the ones you love. All the joy and happiness in your life is always in the distant future. Depression seeps in and for awhile you can withstand on hope for a healthy future alone. But when year after year it doesn’t come it gets harder to believe that things will change and suddenly all that you were living for slips away.

And the hope did slip away.
As I got older doctor’s stories changed. Instead of the confident outlook they had at 18, 19, and 20 things started to change when I turned 21. At 21 they told me, “You’ll probably still grow out of it.” I was heartbroken when it wasn’t true. At 22 they told me, “You could still grow out of it.” I was dismayed. And at 23, “It is unlikely you will grow out of it.” By 23 I was destroyed. At 24 and 25, there is no talk of growing out of POTS.

False hope hurts.
I started to feel lied to- stupid for looking forward to things. Not growing out of my condition led to a dissipation of trust, especially of the doctors who gave me false hope. Sometimes doctors in general. Why should I ever listen to them? I was convinced that because they lied to so many times and would do it again.

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False hope keeps us from coping with our illness.
When my illness felt temporary it was easy to just be in denial. I would pretend to be healthy, then push myself too far and be bed-ridden for weeks. I would try to go out with my friends, keep up with them, and then not be able to walk for the next two weeks. I convinced myself I was still a normal healthy teenager then came crashing down. But nothing was wrong. In doing so with my illness, I hurt myself in this stage of denial. Because it was all temporary I didn’t even bother dealing with my condition. As a result, I missed out truly living. If I had learned to manage and cope with my illness I wouldn’t have missed out on so much of life. I would have spent that time adapting instead of waiting. I could have spent that time learning to be happy despite my condition.

In the year before my 24th birthday, I came to terms with the fact that I am not one of the people who will grow out of POTS. Since I have had the best years in terms of coping. In no way has any of this been anywhere near easy. Letting go of that false hope, disappointment, anger, and frustration really helped me actually deal with what was happening and move on to live my life. I learned to cope; I adapted to survive.

I truly understand the instinct to tell people they will grow out of the condition. Even at the Dysautonomia International Conference, I found myself saying that I hope others would grow out of POTS. I know that false hope has made things harder for me so why would I impose that on other people? We want something to hold on to and to give others to hold on to. We don’t want to admit that the reality is that this is something we will have to deal with indefinitely. However, learning to adapt to POTS and live life despite it made for a far more satisfying life than waiting for it to pass.

My advice to anyone, likely to grow out of POTS or not, is to adapt and learn how to live your life and find happiness despite your condition- whether temporary or forever. Waiting for it to get better and putting your life on hold will only hurt you more. It is okay to have hope but don’t let your hope leave you frozen in place.

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8 Things Healthy People Need To Stop Saying

Dear Healthy People,

There are a lot of articles out there about what you should stop saying to sick people. Here are some things healthy people need to think about before they say because they are hurtful. Please stop saying and doing the following. You are being insensitive and ignorant.

I try so hard to be empathetic and tactful, but I am so sick of these people not even attempting to be tactful or empathetic to me in any way so, this time, the gloves are coming off. I’m sick of your crap and am calling you out.

1. Sorry But I ___________________

  • Was in pain
  • Was sick
  • Hadn’t slept well

Using pain, illness, or lack of sleep as an excuse for bad behavior is incredibly irritating.

I recently had someone go off on me in anger and blamed it on not sleeping well… for two nights. At the time, I had slept an average of 1 hour a night for the last 30 days. It was insulting for someone to treat me poorly and use not sleeping well for two nights as an excuse for their behavior when even after a month without sleep I was still nice to her.

When you have a chronic illness you don’t get to use pain, illness, or lack of sleep as an excuse to be rude to people. If you did you would lose every person in your life within a week. I realize that being sick or sleep deprived for many people is an uncommon and terrible thing to deal with. But it feels so terrible that healthy people get to use it as an excuse when I strive to be a good, nice person despite dealing with dislocated joints, not sleeping for weeks at a time, and all the crap that comes along with having a chronic illness.

2. I Know How You Feel
When healthy people say this to me I seriously want to scream. First of all, being sick for a long time is nothing like having an injury, being acutely sick, or not sleeping well a few nights. Pretending it is the same minimizes the biggest struggle of my life, a struggle that is hard to clear my mind of for a single minute because my pain is there to remind me constantly. Unless you have had to grieve for the loss of your old life when you were healthy you should not say this to someone with a chronic illness.

Secondly, comparing someone’s illness to your situation is messed up. Why do you have to make the comparisons? Why can’t you empathize instead of minimizing my problems? Plus, let’s be honest. If you want to play the comparison game you will lose. You haven’t slept well for a few days? Try months. Your shoulder is sore? Try dislocating multiple joints a week. You have had an ear infection for a week? Try having a sinus infection for 6 months or a debilitating illness for almost 8 years.

I can feel sympathetic to your pain and illness, but if you compare it to mine or minimize my illness my ability to empathize with you will go out the window.

Parents, you not sleeping because you have a child is not the same thing as dealing with a chronic illness. You chose to have children. I didn’t choose this. Being tired is not the same as feeling the crushing fatigue of a chronic illness. So no, you can know tired and not have an infant. Stop minimizing everyone else’s experiences because you have a kid.

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3. I Have Been Sick For SO Long
Being sick sucks. Being sick for a while really sucks. I get it; I really do. This is not an “other people have it worse thing,” you are allowed to have a hard time. I can support you through that. It is a problem when you say these things to me or other chronically ill people without considering how I feel. Hearing you say that having a cold for a couple weeks as “so long” feels like you are ignoring the fact that that happened to me once, but the difference is my illness never went away.

I have been sick for 7 years, 8 months, and 6 days. I have not gone more than 3 or 4 hours (awake) that entire time without my body reminding me that I am sick, that I am not normal. When you forget that, when you ignore that, it is a slap in the face.

I will support you for the entire time you are sick but please do not forget the hard things I am dealing with. Don’t minimize what I am going through because you are having a hard time and I will not do the same.

4. You Are Lucky
You are lucky you get to take “fun drugs.”
I have excruciating pain nearly every minute of every day. The medicines I take are not to get high or have fun. They hardly take the edge off. I would never take them again if I could survive the pain. Being in so much pain you have to take medicine is absolutely not lucky.

You are lucky you don’t have to work/ go to school.
I was on track to go to medical school when I got sick. I am not lazy or avoiding work. I would give anything to be able to go to school and work. I hate feeling trapped into doing less. It isn’t luck; this isn’t a vacation.

You are lucky you can sleep in.
If I don’t sleep more I can function even less than usual. I am not sleeping in because I feel like it, am lazy, or am a bit tired. I sleep in because I cannot stand if I sleep less than 9 hours. My pain is unimaginable if I don’t get enough sleep. I sleep out of necessity, not pleasure.

The list goes on and on. How inconsiderate are you that you can’t see that having a chronic illness is not in any way lucky?

5. I Couldn’t Do It, I Hate _______

  • Taking medicine
  • Shots
  • Going to the doctor
  • Hospitals

I hate them all too, but when you have a severe chronic illness you no longer have a choice. When people say this I am not sure how to respond. Are you implying I do like these things? Do you think these things are optional? I have to do things I hate all the time to survive.

If you were chronically ill you would have to do all those things too. You do what you have to to survive. What you want, what you enjoy no longer matters when you are fighting every day to survive.

6. You Can Do Anything! Mind Over Matter!
I know you are trying to be inspirational but this is really insulting to disabled people. No matter what I do I will never be able to climb a mountain, become a surgeon, or run a marathon. Being literally unconscious puts a damper on accomplishing all your dreams. And that is what happens when I try “mind over matter”- I faint.

So no, don’t spew that crap to me. I am limited by my condition. Just because you are able bodied do not tell us we all of are able to accomplish anything we put our mind to.

7. I Never Get Sick
People say this with pride to me all the time. The only reason I am sick and you aren’t is chance alone. You are not better than me because you happen to be healthy.

When you say this with pride you make it obvious you think you are better than me because you are healthy. It makes it obvious you think I have control over the fact that I am sick.

8. At Least You Are Used To It
Discounting what I am going through because I go through it constantly is also insulting. My condition causes a different pain every day. It doesn’t get less shitty because I have had it for so long. In fact, it gets harder. It is exhausting and soul crushing to deal with pain and illness this long. So don’t dismiss me because I have had these problems for a while. It still hurts and it is still hard no matter how long it has been.

What Is A Poor Man’s Tilt Table Test?

7C11274/3A11275Tilt table tests (TTT) are uncomfortable, expensive, and time-consuming. It is agreed that TTT should be the standard for POTS diagnosis, but wouldn’t it be great if we had a way to look for POTS without going through the entire test? Well, we can. The poor man’s tilt table test as it is called is a check at your heart rate and blood pressure throughout laying, sitting, and standing.

The poor man’s tilt table test is not as reliable and should not be used by laypeople for diagnosis. However, it is a helpful tool to see if you should see a doctor about an official TTT or see a POTS specialist.

If you do not have a blood pressure cuff you can still record your pulse as that is helpful to know as well.

Materials

Heart Rate Monitor (can be on your smartphone)
Blood Pressure Cuff
Another Person

Steps

1. Find a clear space where you can lay, sit, and stand comfortably.
2. Lay down. You may have to lay for up to 10 minutes for your pulse to slow before measuring.
3. Check your heart rate and record. Repeat.
4. Check blood pressure and record. Repeat.
5. Sit up and wait a couple minutes
6. Check pulse and record
7. Check blood pressure and record. Repeat.
8. Stand
9. Check pulse and record (check multiple times over the time you can safely stand). Repeat.
10. Check blood pressure and record. Repeat.

Position Heart Rate Blood Pressure Symptoms & Notes
Laying 1
Laying 2
Sitting 1
Sitting 2
Standing 1
Standing 2

Shortcomings

Doing a formal TTT means that you have medical professionals around to help if something goes wrong. Doing this version means that you may faint and hurt yourself. If you are worried have someone to help keep you safe or wait for an official TTT.

TTT tilt you slowly in a way in which your leg muscles are not engaged. Leg manoeuvres can help with POTS symptoms and standing by yourself means that you may use these manoeuvres and skew the results. If you have POTS symptoms you may have adopted this technique without even realising.

9 Common POTS Myths

There are a lot of common misconceptions about POTS. There are ones I get from doctors, nurses, family, friends, and even other POTS patients. Remember that most of our POTS symptoms are different and that the same thing doesn’t work for everyone!

1. POTS Is NOT Anxiety
I don’t care how much POTS looks like anxiety- it isn’t. The increased heart rate, palpitations, and shortness of breath in POTS are caused by the autonomic nervous system. Medicines for anxiety and medicines for POTS do not work the same and do not necessarily alleviate POTS symptoms.

Anxiety can happen as a result of POTS or alongside POTS but I cannot stress enough that they are not the same thing. Strange scary symptoms can make patients nervous and the life change of living with a chronic illness is enough to make anyone anxious, but the underlying condition is not caused by anxiety.

2. POTS Symptoms Disappear When You Lay Down
I have had multiple doctors ask why I don’t just lay down to fix my symptoms. Let’s get this straight- POTS symptoms are exacerbated by standing but do not disappear when I lay down.

Many people with POTS feel terrible laying down as well. Unfortunately, POTS symptoms can reach you at any angle. Just last week my tachycardia was 130 bpm while laying down and relaxing for four hours. The chest pain and brain fog did not go away the entire time. So while standing makes things worse, lying is not a magic cure-all for our symptoms.

I have talked to very few people who feel 100% better once horizontal but it is not the average POTS patient.

3. Exercise Will Cure POTS
Some people with POTS have had this experience and I am thrilled for them. However, for many of us exercise is not a cure-all. I hear on support groups POTS patients who have been helped with exercise be judgemental and condescending towards those who have not been helped. Additionally, friends and family can claim you aren’t trying hard enough if exercise does not cure you. Please stop people!

Exercise helps POTS but for people like me it is not a cure. I have tried swimming, biking, rowing, and walking daily for months at a time. Exercise helped my symptoms but my POTS is still severe and unrelenting.

Just because you are able to exercise does not mean you get to judge people who can’t (or are not having the same results. Associated conditions that happen together with POTS such as Ehler’s Danlos and neuropathy can make exercise extremely painful and difficult.

 

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Trying to work out with EDS is a lot like this.

 

4. Most People Grows Out Of POTS
I was diagnosed with POTS at 18 and being between a teen and adult made things complicated. Pediatricians claim that many people who get POTS in their teens outgrow POTS; that doesn’t happen as often in adults.

Every doctor I saw that first year after my diagnosis told me I would grow out of POTS. It is 7 years later and my POTS is worse than ever. I understand doctors wanting to give their patients hope but that hope kept me from coping with a major life change. Instead of coming to terms with having a chronic illness I only thought of POTS as temporary.

This negative experience is not unique to me. A lot of people who are diagnosed with POTS in their teens will never grow out of it. A lot of this has to do with associated conditions; for example, people with Ehler’s Danlos rarely grow out of POTS. Telling all teens POTS is temporary, when many cases are not, is not helping them cope with their illness.

5. POTS Is No Big Deal
POTS can be an annoyance or it can be severely debilitating. This variance is part of why POTS is so hard to understand. Often people who have heard of POTS have a friend mildly affected and cannot understand more severe cases.

“Claire never cancelled this much on me and she has POTS too. You obviously are just making excuses again.”

 

Don’t be confused by people with less severe cases; POTS is often far more than an inconvenience. Experts are clear. POTS can be serious and hugely lower patient’s quality of life.

flake
Somehow being too sick to go out makes me a flake and is grounds to yell at me. I did not choose this.

Comparisons in the diminished quality of life in POTS have been described as equal to congestive heart failure, chronic obstructive pulmonary disease, and end stage kidney failure patients on dialysis. Some people with POTS are absolutely bedridden and unable to care for themselves. About two-thirds of POTS patients cannot work full-time and 98% of POTS patients cannot socialize as much as they would like.

POTS can be a big deal.

6. POTS Has Nothing To Do With Pain
POTS is not commonly associated with pain, but often causes a lot of patients pain. Chest pain is exceptionally common with POTS and is sometimes severe (I have had POTS chest pain hurt as much as a pulmonary embolism). POTS is also associated with migraines, neuropathic pain, and joint pain.

Many conditions associated with POTS cause pain as well. Ehler’s Danlos causes an extraordinary amount of pain and autoimmune conditions may cause pain as well.

7. Lifestyle Changes Can Cure Everyone
There are some naive people who believe that no POTS is so severe that it needs medication. I recognize why lifestyle changes should be considered first. For many POTS cases more salt, water, and exercise are all that is needed to control symptoms. However, there are some people who still cannot function with these changes.

No matter how much I exercise, drink water, wear compression, tilt my bed, and eat salt I still faint without a beta blocker. I still do all those things but lifestyle changes alone aren’t always enough in so many cases.

8. Blood Pressure Changes Have To Be Involved For Diagnoses
The diagnostic criteria for POTS are about pulse, not blood pressure. While some changes in blood pressure may occur during a tilt table test or upon standing POTS is not the same as orthostatic hypotension. Hyperadrenergic POTS can affect blood pressure as well, but does not have to be present for diagnosis.

9. POTS is Not Rare
1-3 million Americans have POTS and about 1% of teens have POTS. It is more common than both ALS and Parkinson’s Disease, but awareness is a huge problem. As a result, it doesn’t seem like there are that many of us or that POTS is worth researching. Awareness will help fix this.

For how common POTS is there is some exceptionally bad information out there. As a result, people are getting the wrong ideas about POTS. Dealing with misconceptions constantly becomes frustrating. What misconception are you sick of correcting?

Dating With A Chronic Illness: The 7 People You Will Meet

Dating with a chronic illness can complicate things. Here are the 7 types of people I’ve run into:

1. The One Who Ignores Your Illness

A lot of people have no idea how to interact with someone with a disability. While some people may attack the issues you face head on, these people avoid the topic at all costs. They rarely ask you how you are feeling, avoid topics of doctor’s appointments, and generally clam up when the topic turns to anything health related.

In my experience, these people do actually care if you are okay, but really don’t know how to go about talking about it. Unfortunately, not discussing a huge struggle in your life with your partner just doesn’t work. Education leads to understanding. If someone isn’t willing to talk about your illness it will be more difficult for them to understand problems that pop up. They lack the knowledge to understand why their sick partner had to cancel at the last minute, why they can’t eat the chocolates they gave them, or why those surprise concert tickets pose a problem.

MRW my friend tells me he proposed to the girl he's been dating for three weeks... - Imgur

2. The One Who Pities You

I love it when a partner rubs my head when I have a migraine, or is sympathetic to my venting. This sympathy can cross over to pity which gets old fast. Having a chronic illness is definitely a struggle but I don’t want to be constantly reminded “how strong I am” or asked “how I don’t give up.”  I want to be an equal in my relationships, and being constantly babied takes away from that.

Sympathy - Imgur

3. The Overly Helpful One

Yes, someone can be overly helpful. These partners go above and beyond when trying to help you manage your illness. They even help you with things you don’t ask for, and for a while everything is much easier. The problem with the overly helpful partner is that they almost always burn out. They put helping you with your illness over their own needs. And when they burn out you are the one who gets burned. Not addressing their personal needs leads to them resenting the person they are trying to help.

These breakups are often very abrupt and sudden. One day they are driving you to the hospital and sitting up with you all night and the next day they leave you alone in the hospital to go to a party saying it is all too hard. All of a sudden all the things they did for you (that you never asked for) are all your fault and you aren’t thankful enough for everything they do. Finding someone who can be honest about their needs and not stretching themselves too thin is extremely important.

When i realize the girl I started dating has low self-esteem.  - Imgur

4. The Expert

Calling this partner the expert is wholly inaccurate and really just my way of ridiculing them. People with chronic illnesses will run into “experts” on their condition all the time. They suggest ridiculous things you have already been checked for or try to tell you about an illness you have had for years and understand very well. I’ve even dated people who get upset with me for not following their suggestions, “have you been checked for gluten sensitivity again yet?” They think the only reason you aren’t cured is because you haven’t had their ideas yet. These people also see not following their ridiculous suggestions as not trying hard enough.

MRW my parents start asking too many questions about what I'm doing these days... - Imgur

5. The One Who Can’t Stop Asking If You Are Better Yet

Sometimes you can explain your illness a hundred times, define chronic repeatedly, and do your best to educate your partner and they will just never get it.  They will say things like “oh, you’re still sick” or “wow you still aren’t feeling better” or “when you are healthy we can go out.” I have a chronic illness! Chronic means long term; I am always sick!  They just don’t get it no matter what you do.

MRW my teacher yells at me for calling a girl dude because it's condescending towards my whole gender - Imgur

6. The One Who Can’t Handle It

This is the most common person I run into while dating and I must say it has left me frustrated. Sometimes my chronic illness comes up naturally in conversation, and other times I have to modify plans and it will come up. It is perfectly common to never hear from them again after this. For a while I thought I was paranoid and that it has nothing to do with my illness or that people just thought I was being flaky. However, I have had a few people outright tell me they aren’t okay with dating someone with a chronic illness.

For example, on one online date, within fifteen minutes, I had my date say “But she had Crohn’s disease and I am sure as hell not going to put up with that bullshit.” I walked away. What an insensitive jerk.

Trying to find a boyfriend before Valentine's Day - Imgur

7. The One Who Supports You

I’ve found finding people who support you through your illness to be incredibly rare and even more so in dating. The best partners treat the chronic illness as something you are fighting together, not a negative personality trait that is your fault. Remember that you always deserve someone who supports you!

MRW I find a profile on a dating website that mentions imgur - Imgur

FOMO: 8 Ways to Stay Social with POTS

The decline in quality of life we experience with POTS is comparable to someone with congestive heart failure. So it isn’t surprising that our social lives, frankly, suck. Finding friends that understand when you have to cancel is incredibly difficult. Finding friends who understand to the point where they don’t insist on activities that include standing, alcohol, or being out in the heat seems to be impossible.

Last Monday I tried to go out with friends and ended up puking in the bathroom and sleeping in the car. Then at a small party this weekend I was feeling terrible and had to keep going outside so as to not throw up. I fainted in the hallway, was in a ton of pain, and just all around felt awful. When I came back my partner made a comment on how I was missing out on everything. Well that comment hit me really hard. It really does feel that way.

I try and go out with friends and about a third of the time I feel too terrible to enjoy myself. Almost every single time I am around people I feel isolated by the pain I’m in. I do miss out on things with my friends, and most of my friends have left me behind altogether. The worst part is that I am not alone, and that most of us with POTS feel this way. In fact, 98% of us felt like POTS gets in the way of a social life.

Does POTS prevent you from socializing as much as you’d like?

Yes 98%
No 2%

Source

So what is there to be done? Humans are social creatures and not being able to socialize is a huge detractor from quality of life. Unfortunately, there is no magic solution, but there are things that may help:

1. Educate your friends

Unfortunately this only works if you have really awesome friends. A lot of time my attempts to educate fall on deaf ears. Some of the resources I have found most helpful are the spoon theory or this condensed and easy to understand information from Dysautonomia International. Being clear about activities you can and can’t do is essential. People aren’t going to make the connection that if you are heat intolerant you can’t go to an amusement park in the summer (even though it seems obvious to us), or that if over-stimulation messes with your POTS a 3D movie is really going to make your symptom worse. Being clear about what you can and can’t do helps a lot with understanding.

2. Push yourself, but not too hard

About two thirds of the time when I push myself to do something social it ends up being fantastic and I don’t regret my choice. I may not feel well, but being around friends keeps my mind off of it and finally getting to feel slightly normal. It really makes a world of difference in my mood and ability to deal with my illness. That is why I say push yourself, but not too much. We all know what happens when you use too many spoons.

Every single time I want to go out it involves “pushing myself.” Even getting dressed and ready is a huge accomplishment. I don’t think people around me realize that, but i wish they did. You are the only one who can gauge what you are up to doing.

3. Join online support groups

These have been so helpful to me and lots of other chronically ill people. Just go to Facebook and search for your condition. Be aware that some groups may not be private and you may want to make an alternative account.

4. Join in-person support groups

There are a few of these scattered throughout the world. It definitely helps if you live in a big city. If you live in Denver or Colorado message me on Facebook and I will add you to our group. Finding just one other person to chat with occasionally can be really helpful!

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5. Try Meetup to find people who get it

Meetup is great for finding general chronic illness groups. People in the group may not have POTS, but they know what it is like to live with similar problems.

6. Suggest Activities that Work for you

The default with my friends is to go out to bars when we want to hang out, but sometimes that is too difficult. Standing, driving, drinking, and (for some reason) bar-stools are not things I do well with all the time. A lot of times your friends may be completely happy to binge watch Netflix or have a movie night in and all you have to do is ask. Suggesting things you can still do instead of cancelling is a great way to stay social. Sometimes it is hard to ask because it feels like you are expecting others to accommodate you, but if you have good friends they will be happy to spend time with you no matter what you are doing.

7. Don’t Worry About Being “the sick person”

This is a difficult one and I really need to work on taking my own advice. You may have read my post about being temporarily paralyzed after an injection. Well that weekend I had a social event that I really wanted to make, but couldn’t walk. I bit the bullet and went out in a wheelchair. Using a wheelchair when you only need it is so confusing to people for some reason, but I recommend it wholeheartedly. Using a wheelchair makes going out so much easier because it takes away from the standing and walking usually involved. I got a lot of questions, but I don’t mind those from friends. People were surprisingly eager to help. I didn’t feel like the “sick girl” either. My friends and acquaintances seemed to talk to me as a person, and not talk down to me as someone in a wheelchair which I was worried about. Plus I got to wear heels without falling on my face- added bonus.

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Fear of fainting is another barrier to going out. Fainting in public is not fun. People assume you are drunk, freak out and call and ambulance, give you terrible and unnecessary CPR (and sometimes break bones), or literally step over your unconscious body. So it is understandable that 44% of have a fear of fainting in public that prevents us from going out. My recommendation is to carry these cards, wear a medical bracelet, make sure any friends around you know what to do, and not to go on first dates or hang out with complete strangers unless you feel great. Always remember you can turn down an ambulance ride; they will try to convince you to go because they won’t understand POTS. That is why it is helpful to have a friend who knows about your condition and will stand strong in not letting them take you to the hospital.

POTS-related barriers to socializing

Low energy 87%
Brain fog 60%
Unable to stand 56%
Physical pain 54%
Fear of fainting in public 44%
Unable to drive 38%
Fear of needing bathroom too often 26%
Unable to shower or groom properly 25%
Unable to drink alcohol 14%

Source

8. Be Honest About your Needs

I should not have stayed at the party this weekend. It ended up with me feeling ever worse and I wish I hadn’t been stubborn. If you feel awful, rest. The fear of missing out (FOMO) can be a hard thing to deal with, but it is better than making all your symptoms flair. My friends joke that everything crazy happens right after I fall asleep, missing out sucks, but what else can I do but laugh at it?

Kristen-Bell-Laughing-to-Crying

Compression For The Clueless

Doctors insist that POTS patients make many lifestyle changes. One of the easiest lifestyle changes you can make is wearing compression garments. Compression garments work to raise low blood pressure, prevent swelling, and minimize blood pooling. Compression garments aren’t a magic fix, but they help many POTS  patients enough to use them daily.

Myths
Compression garments are uncomfortabledream-panty-2014-all-med
This is often true at first. Finding the best length, pressure, and brand will make a world of difference in your comfort. My favorite, most comfortable tights are JUZO soft. They come in different colors and pressures. Experimenting with different tights can be expensive, but in many cases it is worth it to find ones you are comfortable to wear often.

Compression Garments are ugly
They don’t have to be! Medical white and tan are not your only options. Rejuva health has compression garments that I get compliments on a lot- no one even notices they are for compression. However, my favorite tights are the not from Rejuva Health because I find other brands more comfortable. For example, my favorite (Juzo soft) also come in fun colors (as seen above to the right) and are nice and comfy. Here are some ideas to rock the tights and look fabulous instead of sick.

coloredtights14

This is not me- Source

You Have to Wear Compression 24/7
I wear compression tights nearly every single day, but not for everything. When I am going to be up on my feet and standing a lot they are a necessity. However, if I am watching a movie at home I don’t wear them. I can put my legs up and take a break from compression; it feels nice- even when they are comfy. I also do not wear compression to sleep unless I am having severe leg pain. If I want to wear compression constantly, I will wear a lower pressure while relaxing.

You Don’t Have Choices

There are a lot of different options. You can choose the color, length, pressure, open toed vs closed toes, open crotch vs. closed crotch. In fact, all your options can even be overwhelming once you know where to look. Here and here are great places to start.

Tradeoffs
There are some tradeoffs for compression tights that you will have to figure out for yourself what is more important.

Heat vs Compression
In the summer, compression tights become difficult. I am heat intolerant like most POTS patients, because I feel terrible the warmer I am, it is a tradeoff to what will make me feel best. Personally, I have found that 80F degrees and below compression garments are worth it. Beyond that, I get too warm for compression.

EDS vs. Compression
As the pressure increases in the compression garment, it becomes more difficult to put tights on. This can be a problem if you have Ehler’s Danlos as your fingers may subluxate or dislocate. These people may want to stick to a lower pressure or get help putting compression garments on.

Sometimes putting on compression tights is difficult, with or without EDS to deal with. This video shows some methods. Don’t worry, with some practice it gets much easier! 

Levels of Pressure*
There are different levels of pressure in compression gear. More pressure is placed on your body as the number increases. If you are willing to spend some money it is easiest to start at 15-20 mmHg and go up in compression until your legs aren’t swelling or hurting as much. Basically, you are looking for the lowest strength to get the job done. If you are tight on cash consider buying 20-30mmHg because it is most commonly used and works the best for most people. Increasing pressure should be done with a doctor if you still do not get relief at 20-30mmHg.

15-20 mmHg
This is a very minimal pressure that is often found in sports compression garments. This low amount of pressure is perfect for short travels and patients with extremely mild swelling and blood pooling. This compression is also commonly used in pregnant women because it is gentle.

20-30 mmHg
This is the most frequently prescribed compression level. It is perfect for extended travel and moderate swelling. This is the most common pressure I hear recommended for POTS, and the one with the most options for stylish tights.

30-40 mmHg
Do not use without speaking to a doctor; you should not wear this high of compression unless medically necessary. I have heard of some POTS doctors prescribing this level for those with severe blood pooling and swelling. This is the strength I usually wear, but for Post-thrombotic syndrome. Compression tights help with my blood pooling, swelling, and pain.

40-50 mmHg
Do not wear this high of compression unless medically necessary as deemed by a doctor. I have never heard of a doctor recommending this level for POTS patients.

Levels of Coverage
argyle-copyKnee High
If you experience a lot of leg swelling, I would steer clear from this length. The swelling in the legs sometimes gets so bad that the band around your knee area that the compression socks end up cutting off circulation. I started out wearing this length but after seeing how much swelling was happening above and around my knees I was told to steer clear.

Thigh Highd_19
Whether you like these or not probably has to do a lot with your body type. If you have slim muscular thighs I have heard of them being comfortable. If you are at all curvy (it doesn’t take much) thigh high compression tights may dig into you, roll down, and look awkward (even with the correct size).

floral_1Waist High
This length is my favorite. I feel like I get more compression, and at least for me they are the most comfortable. People wear tights all the time so I don’t feel like I am dressed strangely while wearing them.

Abdominal Bindersdb5d818797bab086bab7d15d10b63acd
In some cases of POTS, blood pooling that can even go up to your abdomen. I just recently started using an abdominal binder- I didn’t think it would work. It actually helps a lot more than expected. You can find a “waist trainer” that does the same thing and is infinitely more attractive.

Solidea 0433A5 Bilateral with Gauntlet 6_BlackArm Compression
Blood pooling also occurs in the arms. It is not as severe and not even a symptom in many POTS patients. Sports shirts with arm compression or compression shirts with sleeves may help you feel even better. The arm compression helps me minimally. I try to buy it in the winter because that is the only time arm compression outweighs my need to stay cool.

Compression garments don’t have to be ugly or uncomfortable. There are plenty of cute outfit ideas all over the internet for tights. Ask your doctor what compression level to start with and don’t be hesitant to experiment with different brands and lengths.

*This is not intended to replace medical advice. Always ask your doctor if you have any medical questions!

Look for even more on compression in my upcoming book!