The Problematic Push for Absolute Positivity

I am not denying that hope and positivity can be powerful tools to get past obstacles in our lives. However, absolute positivity is often pushed on chronically ill people. By absolute positivity, I mean that we are expected to never complain, have a bad day, get down about our limitations (or really have limitations at all), become discouraged, or stop believing that we can do anything we set our mind to.

I won’t deny that the pressure to remain positive often comes from a good place or that having a generally positive outlook is important. People think that they are helping by insisting we remain positive. However, forcing constant and absolute positivity on people with chronic illnesses prevents them from sharing their feelings and generally makes their lives more difficult.

Creates Unreasonable Expectations

POTS, an autonomic nervous system condition, has many different outcomes for patients. Some people eventually grow out of it; some others have very manageable cases through lifestyle adjustments, medication, or both. The people who are most often actually given platforms to talk about their experiences with POTS, whether at conferences or by ‘likes’ in Facebook support groups, are almost always the people who grow out of POTS or who have very few limitations after treatment. It is understandable people want hope, but it isn’t realistic or helpful to most people with POTS to only see these people.

Being diagnosed with POTS isn’t the end of a life. People, even with the most severe cases, can still live happy and fulfilling lives, but focusing only on people who have made it “past” their sickness keeps us from realizing this. I know the first few years after my diagnosis I wasn’t happy with small improvements and learning to live with my illness. I was only happy with the possibility of being cured. Anything less meant my life wasn’t worth living.

After years of trying medications and lifestyle changes, it has become obvious my POTS isn’t going away. It is something I have had to learn to live with. While it hasn’t been easy, I have found happiness and meaning in my life. My only wish is that I could have found it sooner. I know that if we as a society focused on realism in the face of disability instead of blind positivity, longshots, and false hope I could have come to terms with this version of myself earlier.

This happens for a lot of illnesses. We need to create reasonable goals and shoot for those. Having hope is important, but learning to live with your reality is invaluable too. We can stay positive that we might end up being one of the lucky ones while learning to live with our current reality. It’s the difference between absolute positivity and staying positive, yet realistic.

Doesn’t Allow Us to Mourn or Process

When people who were previously able-bodied or healthy first get sick they go through mourning for their old life. It is an important process in coming to terms with your new situation, much like it is an important process in coming to terms with a loved one’s death. When absolute positivity is forced down our throats, we don’t feel like we can go through the process of grief.

Having a chronic illness and chronic pain guarantees that there will be bad days- days of frustration, hopelessness, sadness, and anger. On these days, having absolute positivity thrust upon chronically ill people means they don’t talk about these feelings. Instead, these negative feelings get bottled up and not discussed. Psychology experts agree that just suppressing feelings is not the best way to be happy; talking about and valuing all feelings is the best way to be happy.

Prevents People from Getting the Support They Need

When absolute positivity is expected from the people around someone with a chronic illness they lose the ability to seek support from those around them. I’ve heard about it too many times, chronically ill people try to talk to their loved ones about what they are struggling and are shut down, so often in the name of absolute positivity. They are told that if they didn’t “complain” or “whine” about their illness so often that they would feel much better. Sometimes they are brushed off and told that they will get past it and not to dwell. We get reminded that someone out there has it worse. We are told to stay positive as a means to shut us up when what we really need is someone to talk to.

These responses aren’t helpful. Often speaking about something that is bothering us takes its power away. Talking about my conditions, my pain, my frustrations, my struggles with an understanding friend has always made them easier to face. Additionally, dealing with my condition is something I deal with every moment of every day. If someone cares about me and wants to be in my life then it is something that is going to come up in conversation.

Sometimes we need to commiserate and complain about the hard part of our conditions. It can be helpful to our overall mental health; talking to someone who understands (or tries to) is the best solution to me feeling down. Once I am able to talk about the negative parts of my illness and be heard, I am able to move on and actually feel more positive.

Expects Us to be Inspiration Porn- Not People

One form that absolute positivity takes on when applied to chronic illness is inspiration porn. Inspiration porn is co-opting a disabled person’s struggles, accomplishes, and experiences for the sole purpose to inspire able-bodied people. It diminishes a living person to an inspirational image telling able-bodied people if they remain positive they can do anything- because some disabled person was able to go rock climbing!

Disabled people make people uncomfortable. They don’t like to think about the fact that we exist. Turning us into inspiration displaces that discomfort. It expects us to accomplish anything, never complain, always wear a smile, and always have a good attitude. These aren’t even reasonable expectations for able-bodied people. We all have bad days, we need to be able to process and feel negative emotions without judgment.

It Is More Difficult to Get Accommodations

When the expectations for disabled people are that they should be able to do anything with a good attitude it makes them harder to get accommodations. When we are told we should be able to do anything in spite of our condition, we struggle to be put on disability, get handicap ramps, get placards, and get job/ school accommodations. And when we can’t work, walk up stairs, walk across the parking lot to the store, or work/ go to school without these accommodations? It is our fault for being lazy or negative.

Absolute positivity gives people an excuse not to make the world welcome to people who are disabled because people believe anything is possible with a good attitude. But no amount of positivity will help someone who is paralyzed make it up a flight of stairs, but a wheelchair ramp will. Having a good attitude won’t let someone understand who can’t hear, but an ASL translator will. Not complaining won’t lead to me suddenly being able to stand for hours at a job without fainting but accommodations can.

Treating Positivity as a Cure Blames People for Being Sick

Positivity is constantly being forced on me regarding my chronic illnesses. What these people fail to understand is that you can have a positive outlook and still feel negative emotions. Having these normal emotions does not mean I am just not trying hard enough. Feeling your feelings is a good thing! We shouldn’t be blamed for our illnesses not being better because we have human emotions, but we are.

Able-bodied people are obsessed with trying to reason that disabled people are sick because we are doing something wrong. They don’t want to believe chronic illness could happen to them or good people. Assigning blame to a lack of positivity is easier than considering chronically ill people mostly don’t have control over our illnesses. Blaming illnesses that cannot be controlled by the people who have them is just cruel.

We Can Injure Ourselves Pushing Too Hard

When chronically ill people fall into this way of thinking, they can hurt themselves. When people believe they can do anything if they are positive they can hurt themselves. Pushing past limits is dangerous for people with chronic illness and can result in hospitalization or even death.

It is so important for people with chronic illnesses to remain realistic about our limitations. We can even be positive and hopeful while doing so. However, absolute forced positivity is hurting us, our friends, our support groups, and our communities.

10 Tips For Going To Concerts With POTS

Up until recently I had given up going to concerts. It just seemed impossible with POTS. A lot of times we are required to give up activities we love for our condition. I think it is important to still have a life- to have things to live for and look forward to. So here are some tips to make concerts a bit easier in the hope concerts will not be added to the list of things we cannot do because of our illness.

1. Call Ahead

     The venue makes a large difference in whether I can attend a concert or not. I have had venues, such as Red Rocks in Colorado, make no effort to help accommodate me. In fact, they won’t even call me back about accommodations. Therefore, I recommend contacting someone at the venue prior to buying tickets. Some good questions to ask are:

  • Is it wheelchair friendly? (Although it is illegal some are not)
  • Are there places for wheelchairs where you can see?
  • Will they let you in early to get a seat where you can see?
  • Can you provide a seat for whoever goes to the concert with me? It will be basically impossible to communicate otherwise (and awkward).
  • Does the venue get extremely hot?

2. Wheelchairs Help

     Having an invisible illness basically guarantees people will not go out of their way to accommodate you. Using a wheelchair means that your illness becomes visible and it guarantees a spot to sit throughout the night.

3. Load Up On Salt & Water

     I drink water and load up on salt even more than usual before events that cost a lot of spoons. Talk to your doctor about safe amounts of either.

4. Frequent Breaks If You Get Overstimulated

     A lot of sound and noise can lead to me feeling overstimulated and foggy. Taking frequent breaks to step outside for fresh air or to the bathroom keeps the overstimulation from bothering me as much.

5. Bring Earplugs

     Some shows are extremely loud and can set off headaches or overstimulation. Having earplugs in case you need them is a good idea.

6. Wear layers

     If you have heat or cold intolerance wearing light layers keeps you from having as many problems with temperature. Commonly, these venues get very warm with body heat so the lighter the layers the better.

7. Small Shows And Venues Are Better

     Small shows and venues tend to be less warm, less loud, and altogether easier to navigate. If you aren’t too picky about what concert you want to see I would definitely recommend finding a smaller show.

8. Wear Compression

     Wearing compression helps me a lot during any event that takes a lot of effort. I find that both tights and abdominal binders are worth the extra heat because they keep the blood pooling at bay.

9. Don’t Go If You Have Something The Next Day

     Even with all of these changes going to a concert will likely wipe you out and cost a lot of spoons. I try to only attend if I do not have somewhere important to be or do the next few days.

10. Don’t Feel Bad About Asking For Accommodations

     Sometimes I find it difficult to ask for help or feel like I am putting people out. It helps to remember that having a chronic illness isn’t your fault and you deserve to live your life as much as everyone else. Making accommodations is their job and doesn’t take much effort from the staff at the venue. In fact, I have heard that it is one of the easier parts of their job (do you know how many people throw up of concerts?).

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?

Visibility and Invisible Illness: 5 Struggles Unique to Having an Invisible Illness

Note: To be clear I am not saying that invisible illnesses are more difficult than visible illnesses. I am not comparing or ranking struggles, just pointing out differences so we can better understand each other better. Each brings its own specific problems, and both are incredibly difficult to deal with.

It has been on my mind lately how different having a chronic illness can be for each person. Recently, I was hanging out with friends when one friend asked me how I had been feeling. I explained that I was better, but not great (my go-to response because what else do you say). Then, someone I considered a friend said “Is there anything you don’t have?”

I was taken aback- why would you say something like that?! Well, his explanation really got me thinking. He has a chronic skin condition that has had some pretty bad flares. He explained that he hates when people pity him and he prefers to crack jokes instead. I honestly didn’t know what to do with that response. He gets pitied so often he thought an insensitive joke would be better? I rarely get pity and that hasn’t been my experience at all. I just could not relate.

So what is so different in our experience? How can we relate so little to each other? Visibility.

I tend to be in casts, braces, on crutches, or in a wheelchair more often than the average person. At these times my illness becomes visible. The majority of people of us with POTS usually deal with the struggles of an invisible illness. Invisible illness is when someone has a chronic illness, but you can’t tell just from glancing at them. Occasionally, we are visibly sick because of blatant POTS symptoms, PIC lines, mobility devices, or feeding tubes. However, the majority of the time I don’t look obviously sick. This is a blessing and a curse. I can pass for healthy and avoid constant glances and invasive questions which obviously can be nice, but here are some of the terrible parts as well:

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1. Being Told It Is All In Your Head

I was told for years that my symptoms are all in my head. It is harder for doctor’s to diagnose problems you can’t see. I’ve been told by doctors that I am hypochondriac, that I have a low pain tolerance, that I have Munchausen’s, that I’m overreacting, that I’m anxious, depressed, and anorexic. The worst part? After long enough my family, friends, and even I started to believe them. After hundreds of tests it isn’t hard to believe that maybe you’re just crazy.

Emotional stress isn’t the only danger of having no outward symptoms. I nearly died because no one believed my pain when I had a blood clot in my chest. I was told I had low pain tolerance, was a drug addict, and just had a “stomach bug.” I am constantly having to be my own advocate to ignorant health professionals who don’t believe me and it is thoroughly exhausting.

crazy

2. Diagnosis Can Take Longer

When you only have symptoms and not obvious signs of illness getting diagnosed can be more difficult. With a broken bone they can take an X-ray and tell exactly what is wrong. When you have generalized symptoms that sometimes only be seen in one situation (i.e. Tilt Table Tests) it can be nearly impossible to diagnose and doctors jump to the easy solution when they don’t know the answer- dump you with the excuse that it is a Psychology issue.

3. Difficult For Friends and Family To Understand

Friends and family don’t understand why you can’t do the things you used to because we look the exact same. It is more difficult to understand why your teenager suddenly can’t help with chores when they look the exact same. Friends don’t understand why you are suddenly cancelling on them when you don’t look sick.

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4. Judgement From Strangers

When strangers see people with invisible illnesses in a wheelchair or using handicap bathrooms, parking, etc. they jump to judgement. I get rude comments, and other’s with invisible illnesses regularly get rude notes. I get the comment “but you don’t look sick” and am dismissed and chastised. I nearly never get sympathy. If you need more convincing, these notes are really common to receive on our cars with invisible illnesses:

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Could you really be anymore ignorant and insensitive?

5. Judgement From Those With Visible Illnesses

The strange things about it is that there are a ton of us with invisible illnesses, but we are misunderstood even by others with chronic illnesses. This week someone called attention to a post on a Facebook group called Disabled Dating that read “If you don’t look like you have a disability you will be booted from the group.” So many disabilities aren’t immediately obvious! How do you even say something like that?

This is a great website for invisible illnesses.

Visible Illness Problems

I have much more experience with my illness being invisible, but my experience when my illness is visible has been completely different. People with visible illnesses do tend to get more sympathy, but there are also terrible downsides I would never wish on anyone. People ask invasive questions about their condition, and they get a ridiculous amount of pity. We could all use some empathy, but pity takes it a step too far. People with visible illnesses are talked down to in an incredibly dehumanizing way. People are constantly saying things like “you’re so brave” or “you poor thing.” People also expect some visible illnesses to be short-term and constantly ask when people will feel better, be getting out of a cast, stop needing a port, or stop needing a feeding tube. Constantly explaining your problems are chronic is also frustrating.

Our experiences with visible vs. invisible illness are certainly different in many ways. One thing in common is people have no idea how to talk to chronically ill people. We should at least learn to relate to and talk to each other.

Do you have a visible illness? Would you like to share your experience on how the challenges differ and are the same? Submit a guest blog post! Email me

The Privilege of Independence

When my parents dropped me off for my first day of camp when I was five they expected it to be tough. It was tough, but just for them. I was ready to leave and meet new people and to be on my own. When my dad came to visit me at lunch I even gave him the cold shoulder; I was busy with my new friends! I have always been extremely independent even that young. I do not like having to rely on others and prefer to trust myself to take care of me.

We expect to need others to rely on both early and late in life. Children are unable to care for themselves and the elderly often experience the same fate. In our society this dependence is both accepted and expected. However, as adults, young and old, often we are expected to take care of ourselves and maintain 100% independence. This is not always the case. What happens when we get cannot rely on ourselves alone?

Independence and being able to rely on ourselves alone is a privilege. It isn’t one you would know you have unless you have lost it. For those of us with severe physical or mental illness we no longer have that privilege. If we do not rely on others (or are not lucky enough to have these people in our lives) we end up homeless, dead, or injured.

A few years ago I experienced 3-4 blood clots that sent my health into a downward spiral. I went from a fiercely independent high-achieving pre-med student, an avid volunteer, a distance runner, and a dancer to becoming bed-ridden. I also have Dysautonomia; in my case means that I faint anywhere from once a week to once every 15 minutes. I also discovered I have Ehler’s Danlos, leading my joints to dislocate or pop out of place and cause frequent excruciating pain. Occasionally, I can live normally and near independently, but often I have to rely on others. Sometimes I cannot get food myself, make enough money for rent, or even walk to the bathroom without a shoulder to lean on.

It has been an incredibly difficult journey, and I have had to learn to rely on other people and let go of independence. I loathe it; I abhor having to depend on others. I really do. Learning to rely on others without feeling like a burden has been one of the hardest thing I have had to face and likely will continue to face for the rest of my life. Because it is so difficult, I absolutely hate when people who are judgemental about my “lack of” independence.

Tina-Belcher

Friends, family, and infuriating strangers frequently make comments about how important maintaining independence is. They are often incredibly judgemental in doing so, and they are not entirely wrong. Many forms of independence are important and healthy. For example, I am all for healthy attachment in relationships. Individuals should stay an “I” instead of morphing into a “we” without lives of their own when they enter relationships, friendship or others. However, asking for help from your loved ones when you need it can be absolutely healthy and necessary. That is not an unhealthy loss of independence and should not be treated as such. Independence should be valued, but independence does not mean doing everything on your own. You can retain a healthy independence and depend on the help of others.

It has taken me some time to realize that asking for help when you need is not admitting weakness, but I have become a better person and have a better life as a result. I can’t live alone, but have learned to better appreciate my wonderful roommates. Learning to get help from others has helped me be a better friend too. Learning how to ask what you need from people helps them better ask you when they are in a tough spot. Realizing the strength it can take to ask for help makes it easier to help loved ones with that in mind. Additionally, I know the people who surround me are real friends and that we can lean on each other when we need to.  

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I have my own hobbies, friends, and job. I am independent in all the healthy ways that matter. However, I do have to rely on others and let go of independence because of my illness and that really is okay. Independence is absolutely important, but people need to stop equating needing the help of others with an unhealthy dependence on others. If you are healthy and have the privilege of not having to depend on anyone else- good for you. You also need to realize that is not the case for all of us. Many of us have to rely on others to survive and that does not make us any lesser than those who do not.

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. 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 we 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. Uncured and under-researched diseases are likely to witness this. People insist a workout program, biofeedback, a diet, or drug is the cure for their disease. While we are all incredibly happy that it helped for you please stop getting people’s hopes up! 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 patients with invisible illnesses 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.

I will answer your questions!

Need advice on living with POTS? Questions on POTS?

You’re in luck!

Successful penguin celebrating his...two steps. - Imgur (1)

POTS patients often can’t just ask their doctor or find an answer on the internet. Some doctors haven’t even heard of POTS and there just isn’t that much information on the internet. We all need a forum for questions and answers!

As many of you know by now I am writing a book on POTS. I see a lot of the same questions about POTS and questions with no answers. Now you can submit your questions or ask for advice on POTS. I can’t guarantee I will know all the answer, but I will find someone who can answer(if there is an answer)! So post your question on our wall to be answered here.

POTS and Parenting- Do you have any questions about what it is like to have a child with POTS? We have some wonderful parents willing to share their experience.

POTS Treatment Center in Dallas- Do you have any questions for Dr. K who runs the center? If you have been please take the survey!

Share your experience- If you have POTS and would like to share your experience in the book please message me.

Help answer questions- Are you a medical professional? Are you an expert on any POTS-related subjects? Do you have POTS and are interested in helping others? Message me to help others.

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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.

Lifestyle Changes: Which ones are worth it?

A lot of my experience with POTS specialist has been telling me things I can’t do. So which ones (for me) actually are worth a try and which ones just lower quality of life for not much payoff? These are just what have been my personal experiences over the past 5 years.

Carbs and Sugar: Try it. One of our fellow POTSies, Ella (Deliciously Ella), changed her diet and saw a huge change in her symptoms. That is great but not everyone does. I have found that if I cut out most carbs and simple sugars I feel a bit better, but it really is just a bit. So try it. See if it is worth it and support another POTSie. It is worth it to mention that a lot of her recipes are not Gastroparesis friendly. If you have a broken stomach beware.

Stop Drinking Alcohol: Hell no! If I make sure to remain hydrated then I am going to drink. I was diagnosed with POTS when I was 19 and I have been drinking since I was 21. I love red wine and if I want to drink and be social the one time a week I can actually have a social life I am going to. I am in my young 20’s and POTS already feels like it has murdered my social life. I drink extra water, have extra salt, and say do it. I am not going to let POTS stomp out my entire social life. Just use moderation people. POTS + a hangover can set you back days.

Its true alcohol does kill people buutt.... - Imgur

Stop Singing: What? NO. I had a doctor tell me to stop singing. It is supposed to help. Um are we trying to get rid of any fun I could possibly have? I sing in the car and that’s not going to stop.

Working Out: HahaHaha. The fact that working out is supposed to help in a condition where we have exercise intolerance is the universe’s cosmic joke on us. For me personally this doesn’t go to well. I try and work out and end up passed out later that day and even worse the next day. It seems to be worth a try for most people but be careful if your POTS is severe.

Eat a Ton of Salt: Do it. I have at least half a dozen kidney stones a year. They think it is both genetic and from my salt intake but I keep having salt. Because as much as kidney stones are terrible increased salt consumption helps me so much on a day to day basis.

MRW someone threatens to call the cops because they don't have their ID and I won't sell them alcohol. - Imgur

Drink a lot of water: Try it. Don’t go and drown yourself because that is possible. However, if you can drink a lot of water and can keep it down then why wouldn’t you try this?

Raise the head of your bed: Why not? I have seen no benefit to this personally but raising the head of your bed is so easy it is kind of like why not try it?

Wear Compression Stockings: Why not? I wear these all the time during the winter. During the summer it becomes a tradeoff between how much warmer they will make me and how much they will help with blood pooling. So usually I wear them but if it is 90+ I am probably going to leave them at home.

Don’t stand a lot: Duh. My POTS is severe enough my body doesn’t leave me a choice in this one, but I think for a lot of people I is important to point out it helps.

Get 9 hours of sleep: DO IT. This helps my POTS almost as much as water and salt. It is completely worth it to make sleep a priority for you.

Duckling falling asleep - Imgur

Which ones do you feel like are worth it? Agree/ disagree?