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!

giphy

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.

tumblr_nhi3kpnvPd1sh43kgo1_250

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

9 Ways to Be Supportive When You Don’t Understand

There are many experiences common to every human. Most of us will go through these, so we can easily relate and empathize. Nearly everyone is affected by the common cold. Therefore, when someone says they have a cold it is easier be understanding and supportive.  Memories of soup, towers of tissues, and feeling miserable immediately come to mind. We know how to support and help each other through a cold because we can remember what we needed. But what happens when you have no idea what a loved one is going through? How do you support them?

1. Realize you don’t have to understand to lend support. As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

As humans we all go through hard times. Two friends I used to babysit, Julia and Evan, were young friends who both supported each other through an incredibly trying year. Julia and Evan show that humans, including children, don’t have to go through the same experiences to support each other. For Julia, the worst experience of her young life has been the loss of her mother. For Evan, the death of his beloved dog has been the most difficult time of his life thus far. So how did Evan support, empathize, or even begin to understand Julia? It is obvious that they couldn’t entirely relate to each other’s experience. However, this doesn’t mean that they can’t support each other. Both children went through an experience that was incredibly difficult for them. While Julia’s mother’s death had a more profound effect on her life, both children felt sincere grief. Sorrow and struggle are real and in the moment. The cause of grief didn’t change the despair either child felt. Because both children went through those hard experiences and felt grief, they can better relate to each other. Even though the causes and degrees of these feelings were different, both Julia and Evan supported each other through their grief.

MRW when my friend's GF starts saying bad things about me and my friend says You never talk to him like that or we're done - Imgur

2. Don’t compare experiences, but do relate to feelings. Whatever your loved one is going through, you have at least some experience you can look at and relate it to. We have all felt frustration, despair, hatred, and pain. For example, if you want to relate to someone who is chronically ill look at what you felt when you were sick. You likely felt pain and frustration, just to a different degree. Therefore, you have the tools you need to empathize with them. Just think, how would those feelings change when sick much longer? What else would you feel? What would you need in terms of support?

Today I got my first full paycheck. After more than a year of just barely getting by due to illness. - Imgur

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

While searching for common feelings remember to never compare experiences. You would never say to someone who just lost their mom “I understand what you’re going through because I lost my family dog last year.” Instead, you want to consider what feelings that loss stirred in you and what support you may have wanted from others. Then you can adjust your actions accordingly and support them successfully.

3. Seek to understand and learn. When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up ”

When your related feelings and experiences just aren’t enough to understand what someone is going through, seek understanding elsewhere. Even if your loved one may not want to walk in detail about what they are going through, the internet is a great resource to find people who will give you insight. You can just look up “what it is like to lose a parent” or what it is like to live with a chronic illness“. Reading these will help you to understand what your loved one is going through. If you still have questions, approaching your loved one and saying “I don’t understand what you are going through but I want to support you” can be enough! This gives your loved one an opportunity to explain what they are going through or, if they do not wish to talk, they will at least know you really care and feel your support.

4. Never judge. The fastest way to make someone feel unsupported is to judge them. Never judge how someone deals with something you have never dealt with. Even if you have dealt with it, avoiding being judgmental is a great practice. For example, you should not say “it has been six months, shouldn’t you be getting back to normal?” Instead offer support and say, “I know these past six months have been hard on you; is there anything you would like to talk about?” Try to understand and support first, judge later (or never).

5. Offer more than your prayers. Prayer is the most common support offered to loved ones going through a hard time. Letting someone know you are thinking about them is great, but what are you really doing for them? Even if you believe in the power of prayer, you telling them you are praying does little for them as far as feeling supported. Letting them know that you are there to listen, cooking them a meal, or cleaning their place is much better. If you want to let someone know you are there for them, do something! Actions speak louder than words. These helping actions will lead to your loved one feeling much more supported than they would with a prayer.

The power of prayer! - Imgur

6. Reach out. Don’t assume they will ask for support. Asking for help is not my strong suit. Asking for help isn’t easy for a lot of people. When people are going through a hard time it may be even more difficult. Vague offers for help with “anything you need” begin to feel empty and contrived. So if you really want to help and support someone ask, specifically, what you can do. Reach out to them whenever you think of them or wonder if they need anything. Even if they don’t need help, they will feel much more supported.

7. Suggest specific ways in which you may help. Suggesting specific ways in which you may help will make your loved one feel even more supported. Even if you aren’t aware of exactly what they need, offering concrete ways in which you want to help shows your support. Suggesting tasks also gives your loved one an idea of what you are willing to do and gives them an idea of what they can ask for comfortably. When I need help I ask people who have offered some specific help in the past. I assume people who say “if you ever need anything just call,” are simply being polite.

8. Listen and empathize; hold the advice. If you have no idea about what going through a situation entails, please don’t give advice on it. I can’t tell you how many people have given me unwarranted medical advice because I have a chronic illness. It isn’t being supportive. When you give advice on something you know nothing about you minimize what your loved one is going through. I have spent the past six years bouncing around the medical system, confusing doctors. My complicated medical problems are not going to be resolved by an ignorant jerk with no medical background who is convinced I just need to cut out gluten.

MRW my ex shows empathy. - Imgur

This of course only applies when you aren’t asked for advice. If you have been asked, give your advice with as little judgment as possible.

9. Don’t pull away just because you don’t understand. Just because it is hard to be there and support someone through a hard time doesn’t mean you should give up. Even without similar experiences you can enrich their lives through supporting them through this hard time. Seek understanding even if it isn’t the easiest thing. They need your support especially now. Even if someone doesn’t ask explicitly for your help and support, they may really need it.

When it comes to depression and chronic illness - Imgur

It is possible to support someone through something you don’t understand. Ask questions and try to understand what they are going through the best way you can. Offer specific suggestions for how to help them, and don’t offer unwarranted advice. Just listen and love. Good luck!

Medical Marijuana

Medical marijuana is a hugely controversial topic, but it doesn’t need to be! Much of the current research is biased towards finding the dangers of marijuana instead of looking at possible medical use. Researchers who have studied cannabis have found many uses for marijuana (in adults).

MRW no one on Imgur is anti-vaccine but we try to convince them that they're wrong anyway. - Imgur

Where is it Legal?

Recreational and medical use is legal in Alaska, Oregon, Washington, Colorado, and Washington DC. In these places you can get marijuana without a red card, or medical card. However, if you have a chronic illness I strongly recommend getting a medical card. You don’t have to pay as much in taxes and the people who work in medical clinics are even more helpful.

Medical marijuana is largely separated from the medical world. I have never even had it suggested for pain by a doctor. I had to seek it out information on medical marijuana on my own. Some medications have made it through trials and are prescribed, primarily by oncologists, for severe diseases such as cancer. If you are interested I recommend speaking to your medical doctor about it.

One reason medical marijuana is so separated from the medical community is because marijuana is still a scheduled 1 drug. This means it has been found that cannabis “has no medical use”, “high potential of abuse”, and “cannot be safely used under medical care”.

To give you a better idea of what this means, both meth and cocaine are Schedule II. That means these dangerous drugs have been determined to have medical use as well as being highly addictive. I think this is a huge misclassification and agree with John Gettman who pointed out, “Cannabis is a natural source of dronabinol (THC), the ingredient of Marinol, a Schedule III drug. There are no grounds to schedule cannabis in a more restrictive schedule than Marinol”. If we are making medicines from cannabis then how can we say it has no medical purpose?

Medical Marijuana - Imgur

 

Is it Safe?

Marijuana has no recorded incident of overdose. Not only does marijuana have fewer deaths than alcohol, but health costs for alcohol outweigh the costs for marijuana by eight times. Both alcohol and tobacco are legal but are considered far more dangerous than marijuana. A study was done on the link between marijuana and hospital visits. They found that marijuana did not increase the chance of going to the hospital.

Alcohol, and many other drugs, are neurodegenerative. This means drinking alcohol kills brain cells. Research suggests that marijuana may have the opposite effect.

To reach the lethal threshold of marijuana someone would have to consume 1500 pounds of marijuana in fifteen minutes. Therefore, marijuana users don’t have to be worried about overdose. That isn’t to say that all marijuana use is safe.

Possible side effects of marijuana use include dry mouth, paranoia, increased heart rate, tiredness, confusion, or memory problems. Because cannabis can raise your heart rate, I recommend being under care of a doctor if you have POTS and want to try marijuana. These side effects may be worse in people with mental illness.

There haven’t been many studies about medical marijuana and how it relates to driving safety. We do know that people should avoid consuming marijuana and operating any machinery. Driving accidents are a real problem with any drug usage and are potentially the most dangerous threat widespread marijuana usage holds.

As of now, evidence suggests marijuana as relatively safe for adults. However, when used regularly prior to turning 18 marijuana can cause problems. Research has shown that there is a drop in IQ associated with teen marijuana use. There have also been studies that suggest teen marijuana use may lead to memory problems.

hi, i'm dory - Imgur

Pain Management

Doctors are cracking down on drug seekers and those of us with chronic pain are taking the worst hit of all. It is true, many people abuse these drugs. Opiates have the potential for addiction and tolerance is a real problem. Despite these problems, researchers are taking their sweet time looking at marijuana as an alternative pain relief method. Instead of looking into a drug that has been proven beneficial (enough to make medical marijuana legal) politics is getting in the way of researching marijuana more and potentially helping many people.

Surprisingly, I have found that medical marijuana has less of a stigma than opiates (at least in Colorado). I have been to too many doctors with kidney stones only to have them tell me I’m drug seeking and turn me away with no relief in any form. The pain relief you get from marijuana is extremely helpful, but they won’t treat you like a criminal (unless you want to get into the whole federal crime issue). People who work at dispensaries are generally very caring and knowledgeable about their product. They have treated those of us with chronic illnesses with more kindness that most doctors have. They can make great recommendations as to tinctures, concentrates, edibles, and flower. Don’t worry if you don’t know what these words mean; they will be happy to explain them to you.

Cannabis has a lot less of a chance of addiction than opiates. There is a chance for addiction, but not due to physical dependency. Addiction occurs due to psychological dependence. More research needs to be done into the relationship between marijuana and addiction.

 

Medical Purpose

Medical marijuana comes in many forms. There are edibles, smoking, capsules, vaporizing, and now even juicing the plant. What works best medically depends on the type of symptoms or just personal preference. Different strains are better for different things. The two primary types of cannabis are Sativa and Indica. Sativa is more energizing while Indica is more relaxing. Indica is best used for sleep problems and pain. Sativa works best for depression and fatigue. Depending on the strain, both Indica and Sativa can stimulate appetite.

After a study on cannabis from the Institute of Health concluded that marijuana should not be used to treat any disease. However, the study concluded that marijuana can be valuable at controlling symptoms of these diseases. One such symptom is paresthesia. Marijuana is especially good for this “pins and needles” pain where opiates commonly fail. Marijuana also works as a muscle relaxer, and can help with multiple sclerosis, HIV, Tourette’s, and cancer.

While Marijuana may cause respiratory symptoms and side effects, the research that has been done indicates that smoking marijuana doesn’t cause lung cancer. In fact, the opposite is thought to be true. Research in its infancy suggests that marijuana may have cancer-fighting properties. While only anecdotal evidence in humans is available, this could have huge implications on marijuana’s scheduled status. Harvard researchers found that when mice with lung tumors were given cannabis cancer growth was cut in half. Nearly one in four of the mice were completely cured and the remaining saw a decrease in tumor size.

 

Cannabidiol (CBD)

It is possible to get marijuana’s health benefits without getting high. THC is psychoactive, but CBD (Cannabidiol) is not and has more medical uses. Cannabis with high CBD causes less memory impairment due to competition for the CB1 receptor. Strains with high CBD have significantly more medical value than the typical strains used for recreation. CBD is also completely legal in all 50 states without a medical license.

Despite the fact that marijuana may have negative effects on a child’s brain, some parents choose to give their severely ill children cannabis. Charlotte Figi, a young girl with Dravet syndrome (a severe seizure disorder), went from having hundreds of seizures a week to a single seizure a week. Charlotte used a strain of cannabis with high CBD content. There is now a similar strain named after her called Charlotte’s Web. Using strains that have a high amount of CBD and not THC may keep the negative memory and intelligent side effects at bay. Therefore, we may see research suggesting medical marijuana is useful to children and teens.

In addition to helping with seizures, CBD has also shown to have antimicrobial properties. One study found that cannabis may even help with acne. Studies have also found that cannabis may reduce the spread of HIV as well as decrease the risk of developing diabetes.

While cannabis may be dangerous in mental illness, CBD has potential use in mental illness as well. Cannabidiol (CBD) has been shown to work as well as traditional antipsychotics used in schizophrenics. Additionally, there are far fewer side effects in patients who were taking CBD than these antipsychotics. Cannabis also is helpful in anxiety and depression.

 

 

Any drug that has the potential to improve someone’s quality of life should certainly be researched more. Keeping marijuana as a schedule I drug is preventing us from seeing all the potential medical use marijuana has. While many of these studies are small and new, there is definitely hope that medical marijuana will be helpful to treating a variety of ailments.

 

Gardasil Hate

Earlier today a discussion regarding Gardasil began in a support group I am a member of. Many people are claiming that Gardasil, the HPV (human papilloma virus) vaccination, caused their POTS. As a result of the discussion, I began to some research of my own into these claims.

The cause of POTS is primarily unknown. So it is natural for patients to search for what the cause may be. However, these claims have not been scientifically substantiated and it is important they are before we let these claims affect our health decisions.

Correlation is not causation
This phrase is so ingrained in my brain from my first Statistics class that I will never forget it. Basically, just because two things are related doesn’t mean one causes the other. As a kid, my dad used to joke that he didn’t like to eat fruit because everyone who has ever eaten fruit has died(commence eye roll from my sister and I). Don’t worry; he knows this is not actually true. What is true is that there is a correlation between fruit consumption and dying, but it occurs because these are both universal human experiences.
Correlation doesn't imply causation, but it does waggle its eyebrows suggestively and gesture furtively while mouthing 'look over there'. - Imgur

POTS is most commonly diagnosed in women who are young. Gardasil is most commonly administered to young women. So there is an obvious correlation, but can we infer causation? Or is the only link that they are both common in the same gender and age? This same question comes up when people argue that vaccines cause autism. Vaccines usually are given just previously to when autism is diagnosed and people assume causation when it isn’t there.

One reason these claims fail is because they claim vaccines are the cause of autism or because HPV is the cause of POTS. There are children with autism who were not vaccinated. There are also people with autism who were not vaccinated. In the same way, there are people with POTS who never had Gardasil.

I believe the connection between these diseases and vaccines is due to the population involved. The symptoms occurring at the same time may seem like a clear cause for some patients. As S. Blitshteyn said, “It is probable that some patients who develop POTS after immunization with Gardasil or other vaccines are simply undiagnosed or misdiagnosed, which leads to underreporting and a paucity of data on the incidence of POTS after vaccination in literature.” POTS is a hard disease to get a diagnosis for and complicates this further.
If Google was a guy - vaccines. - Imgur

Reactions to Gardasil Safety Allegations
After allegations against Gardasil, the Vaccine Safety Datalink and CDC looked into the adverse effects. They found that all the severe adverse effects were no more common in the comparison groups. (Read more at http://www.snopes.com/medical/drugs/gardasil.asp#O3jC8GFs0WQMUEJk.99). I believe that more research should be done, but that is my feeling on most things.

In the group, I am in the discussion about Gardasil began when someone posted this article:
http://www.sciencedirect.com/science/article/pii/S0264410X15004375. Everyone jumped on the Gardasil hate bandwagon, but I am not sure they actually read the study. In the study it says, “In a population referred for symptoms of orthostatic intolerance and other symptoms consistent with autonomic dysfunction that began in close temporal association with a quadrivalent HPV vaccination, we identified a 60% prevalence of POTS”. Well, let’s take a look at what that result means with less jargon. “For patients with POTs symptoms that started around the same time as Gardasil, they identified 60% of them had POTS”. Is that really even surprising? All they concluded in this study is that people who had POTS symptoms, around the same time as Gardasil, were found to have POTS. The study again just demonstrates a correlation, but not causation.

So is it worth it? HPV
HPV is more common than you may think. HPV causes mouth cancer, throat cancer, genital warts and cervical cancer. HPV causes so many problems that I think people should have solid, scientific evidence before dismissing the vaccine as an effective preventative measure.

hpv-cancer-prevention

I can’t say with any certainty that Gardasil is completely safe, but I can tell you it is certainly not the only or primary cause of POTS. Many patients have not even had the vaccine! Research suggesting Gardasil causes problems are case studies of too small to be statistically significant. I can also say with certainty that HPV if a real problem in human health and that we should be working on preventative measures, ensuring that they are safe, and developing a vaccine that prevents more than four types of HPV. The causes of POTS, as always, need to be better researched and identified.

Wondering if you should trust an article? Here are some tips: https://chronicallyridicilous.wordpress.com/2015/04/14/lets-have-a-little-talk-about-a-thing-called-science/

POTS: 6 Things Sick People Need To Stop Doing to One Another

Support groups are wonderful for those of us with illnesses others just don’t get. No one outside the POTS community thinks jokes about fainting, salt, or compression stockings are funny. No one else can relate to the mortifying events like fainting during sex. Groups on Facebook can be great and convenient, but also hostile and dramatic. I know illness can lead to high tension, but we are supposed to be supporting each other! So here are some things I noticed happening a lot; things that need to stop.

Don't Be A Dick! - Imgur

1. “This cured me; it will cure you!”
Suggestions are more than welcome in support groups, but people often fail to make a very important distinction. Saying something may help or it helped you is not the same as insisting something is a cure. POTS has seen a lot of this because it is under-researched. People insist a workout program, biofeedback, a diet, or drug is the cure for this disease. While we are all incredibly happy that it helped for you please stop getting people’s hopes up! POTS is not caused by the same thing for everyone and there are different types, manifestations, and comorbid diseases. To imply that because you were helped by something everyone will be is incredibly ignorant.

2. “I accomplished _____ through hard work; you can do anything!”
Support groups are about support- celebrating good and bad. So if you graduated nursing school or ran a marathon I will be so happy for you! However, saying “don’t let this get you down” or “you can do anything too” is doing more harm than good. Some people are genuinely limited by the same disease. Not being able to accomplish things like exercising, attending school, or working is devastating. Feeling like you should be able to because others with your condition can is even worse.

So I suggest that we encourage each other but keep in mind that some people are extremely limited. Not all of us can “push through” and run or work again. Being unconscious tends to put a damper on that.

3. “It could be worse”
It can always be worse. It is true, but it shouldn’t affect how we empathize with each other. Someone’s struggle doesn’t have to be diminished by another struggle and seeing someone struggle with something worse isn’t going to make you feel better.

When I find annoying sob stories on the internet, I remember the wise words of Dr House. - Imgur

4. “At least you don’t have…”.
Nuanced from the “it could be worse” in #3 the “At least you don’t have…” differs in one key way: comparing yourself.

I will admit that I have fallen into this before. Sometimes when I see people complain about something that doesn’t seem like as big of a deal I fall into this mindset. I try to remember is that just because I may feel that things are worse for me doesn’t make things easier for the other person. It is still difficult for them! And that is the entire point, they are seeking support, a place where they can complain and relate with others. When we compare our situations to others we are taking that place away from one another.

5. “I would rather have…”

Another form of the “At least you don’t have…” is the “I would rather have…”. I have heard POTS patients in the past say things like “I would rather have cancer.” While I think (or hope) that most of them meant they wished they had a condition that has more research, advocates, and visibility in the media, this is still a massively insensitive thing to say. For many people with cancer it is the hardest thing they have ever been through; they wouldn’t wish it on anyone. For you to say you wished you had it trivializes their struggle. So instead say, “I wish my condition was more visible and researched.” Come on guys.

Could you not - Imgur

6. Attack someone who is trying to understand/help
I see this so often. Someone will post to the group with a question and people will answer with their experiences or opinions. Then everyone jumps down each other’s throats. Experiences and opinions shouldn’t be attacked. Seeking information should not be attacked. Differences in opinion are okay. Just stop attacking each other!

1 - GowPGqI

2 - CZQVKHp

We are supposed to be supporting each other. I know in a group I am part of multiple threads have been taken down due to the animosity in the comments.If everyone stopped saying these six things to each other we could all get along perfectly!

Just keep in mind that we are all different and experiences won’t be the same. Don’t compare experiences or assume they have been similar. Support each other! It is kind of the entire point of a support group.