“Oh yes, on Tuesday I don’t have anything. Let’s drink wine and watch that new Pixar movie!”
“I’ll totally watch binge watch ‘House of Cards’ with you this weekend!”
Tuesday comes, and my friend or partner tells me they are grabbing drinks with someone and excitedly rushes out the door. I sit there confused because I thought we had plans. Sometimes there is a strange offering of an explanation before they go, but more often they leave without even acknowledging we ever had plans.
It happens over and over. I become the back-up plan because of my chronic illness. I’m the plan people have if no one else wants to do anything Friday night or if they are too tired to go out.
What people fail to realize is that they were my only plan. There are so many days when I can do nothing more than watch a movie and cuddle. When my healthy loved ones say they are going join me, I remember. I am excited to finally have company in this lonely struggle. I finally have something to look forward to in their company.
It hurts to realize to them I am the back-up plan. Easily changed and forgotten. So easily forgettable when the promise of their company was beyond unforgettable to me.
It is already a struggle to maintain relationships. I have to find people who are willing to hang out in a low-key setting instead of always going out. Even when I find people who understand that not every hang-out will be an outdoor adventure, it is a struggle to find people who take your plans seriously.
Staying social with a chronic illness seems impossible. I’m either branded a flake or have my plans not being taken seriously. It is no wonder socializing is such a struggle with chronic illness.
What can you do to help? Take plans you make with everyone seriously. Don’t treat your chronically ill friend as a back-up plan.
Pokemon Go is a new game that came out this past week and has already become a sensation with 15 million downloads already. The game encourages players to get out, get up, and get moving. The more a player walks around, the more gear they get, Pokemon they catch, the faster they level up, and the faster their “eggs” (containing rarer Pokemon and gear) hatch.
I didn’t play Pokemon as a kid, but I downloaded the game when my friends started raving about it. I quickly realized there would be problems once I began to play: it was designed for people without physical disabilities.
The first night I played the game I limped to the park with my friends to catch Pokemon. Due to postural orthostatic tachycardia syndrome (POTS), one of the conditions I have, I had trouble catching Pokemon. At least for a beginner, the game required standing still in place to catch Pokèmon. I can’t stand still for long or else I faint, but sitting down and standing up over and over again wasn’t an option either. I quickly began feeling badly as my friends bounced around easily succeeding at the game.
The second day I played Pokemon Go I ran into another problem: the game requires a lot of walking. I have Ehlers-Danlos syndrome (EDS), so walking a lot often means popping out or dislocating joints or walking on recently dislocated joints. The game is fun for sure, but little is worth that level of pain. I began to play a lot less while my friends went on multiple walks a day and left me behind in the game.
Wanting to play and frustrated by falling behind, I tried using my wheelchair. I thought surely it will fix both my problems (standing and walking). However, playing in a wheelchair offered its own struggles. I couldn’t wheel and catch Pokemon or go to PokeStops the way my friends who could walk did so. I also couldn’t get to all the things I needed to in grassy areas or up steps. My friends offered to take my phone to these areas, but I wanted to play, not watch them play for me.
It makes sense why they released the game in the summer, but it has raised another problem for people like me. I cannot play most of the hours others can. Even in a wheelchair, I cannot go outside in the summer heat without fainting or severe symptoms, so I have to wait until dark when it cools off to play. When everyone around me is playing, at least during their lunch break, it just leaves me even farther behind.
I haven’t stopped playing Pokèmon Go and will probably continue to play. It is an enjoyable game and is doing great things for the average person who needs more exercise. However, the game definitely feels like it was made without people with physical disabilities in mind. Being left behind by my friends in the game is frustrating and will continue being so because the playing field is not even close to level. No matter how great I am at catching Pokemon, I can never catch up. It is so frustrating to always be behind for reasons I can’t control.
One of the worst parts is the able-bodied people attempting to tell me I should be able to play with no problems. Many convince themselves the game is fair and that a wheelchair or physical disability should not change game-play.
People with physical disabilities are telling a different story. People are feeling left behind, no matter the extent of their limitations. I hope the developers of the game listen to those of us who are actually affected and make changes so the game is fairer and more accessible to us all.
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.
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.
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?
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?
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.
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.
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.
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?