FOMO: 8 Ways to Stay Social with POTS

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

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

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

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

Yes 98%
No 2%

Source

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

1. Educate your friends

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

2. Push yourself, but not too hard

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

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

3. Join online support groups

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

4. Join in-person support groups

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

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5. Try Meetup to find people who get it

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

6. Suggest Activities that Work for you

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

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

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

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

POTS-related barriers to socializing

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

Source

8. Be Honest About your Needs

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

Kristen-Bell-Laughing-to-Crying

Cake is Infuriating: Chronic Pain in the Movies

For those of you who don’t know what I’m talking about, Cake is a movie with a Jennifer Anniston about a woman in chronic pain. When my partner first downloaded the film I was really excited to watch it. Chronic pain is a real struggle for so many people. Our story will finally be told!

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I got my hopes up, but Cake was absolutely infuriating. They had such a great opportunity to share our story and fell entirely short. Not only is Cake a terrible representation of what it is like to live with chronic pain, the film seems to go out of its way to make us look bad. This is a common issue. People with chronic pain are commonly treated like criminals for being in pain. Our entire struggle is diminished as “drug seeking” and society basically shames us for the pain we have no control over. Cake is making these misconceptions worse.

Chronic pain does not equal addiction!

Hades raging. AWESOME gif - Imgur

Claire, the main character of the film, falls short in so many ways. Claire is an abrasive addict. She is obviously addicted to opiates. She likely is actually in severe pain, but she is not responding in a healthy manner. There are people who take opiates for chronic pain and get help the correct way. Claire does not. She lies to her doctor to get medication. She drives to Mexico to get medication. She steals from her dead acquaintance to get medication. She drinks in excess while on medication. She takes an incorrect dose of her medication. She even overdoses as a response to stress!

For these reasons, Claire is an ideal character to represent addiction. The problem is that, for many, she represents someone with chronic pain. She fails us.

Pain isn’t Passing

In Cake, Claire’s pain begins as a part of a car accident in which she lost her son. Claire is in physical rehabilitation to make improvements over her condition. We are shown an aqua therapy session in which Claire gives up quickly due to pain and the therapist complains about her lack of improvement. Eventually, when Claire begins to try harder; things begin to magically go her way. This upsets me greatly. The most frustrating misunderstandings people with chronic pain endure are perpetuated by this horrible movie.

For example, chronic pain is not on a timer. Chronic pain isn’t usually pain from an accident that should continue to improve in time. For a lot of us our problems will get worse with age or stay the same. That “you aren’t better yet?” mentality is so frustrating! Explaining that this is the state of your health and it isn’t going away anytime soon is incredibly taxing.

When my RA asks me if my water bottle is full of alcohol - Imgur

Hard Work… Impossible Work

You just need to “work harder and you will be better!” This mentality, encouraged by Cake, is also harming those of us with chronic pain. In my condition, (Ehler’s Danlos III) hard work and physical therapy are often required to heal from injuries. However, no amount of determination or hard work is ever going to magically fix the collagen in my joints. I will continue to have problems. My control over my recovery is limited by my underlying condition. Just like many other chronic pain sufferers.

At one point in the movie Claire decides she is done with drugs. She even dramatically tears out her IV. I seriously can’t roll my eyes at this enough. In Cake, Claire’s determination was enough to stop the meds and deal with her pain drug-free! This is far from reality.

Liz Lemon Epic Eye-roll - Imgur

For me, pain meds are the last thing I try. If I am on pain medication for an extended time it is because I would not be able to function, survive, and/or live in the amount of pain I am in off of medication. There are too many side effects for me to be on them unless it’s a necessity. Opiates aren’t some nice crutch you start and stop on a whim!

You would never praise a diabetic for suddenly forgoing insulin. If Claire needed the amount of opiates she was consuming, suddenly stopping is unrealistic. Stopping opiates suddenly after an extended amount of time is simply a bad idea. That should have been a decision she made with her doctor. Cake continues this belief that opiates are only for those who aren’t mentally strong enough to handle pain. Taking medication for severe chronic pain is not a sign of weakness. Stop stigmatizing treatment for chronic pain!

Chronic Pain and Suicide

The single thing that I appreciated was that Cake approached topics of depression and suicide ideation. Physical pain can have a huge impact on mental health. It is under-addressed that a lot of people in chronic, severe pain think about suicide and self-harm. It is actually quite natural for these thoughts to come up in chronic pain patients.

What about it wouldn’t be natural? If you were in pain constantly would you too not wonder about escape? Patients who feel this way should be offered support and therapy; under no circumstances should someone in severe long-term pain be shamed. Whether patients disclose depression, suicide ideation, worries of dependency, or ask for a pain medicine there is no reason they should ever be treated as a criminal. Any open and honest communication should be encouraged.

muchpain

If the pain is severe enough that suicidal thoughts are occurring then coping mechanisms need to be enhanced. Often chronic pain patients do not ask for help with these coping strategies despite medical professionals being equipped to help. Both the act of admitting depression or suicidal thoughts as well as requesting additional pain relief are extremely stigmatized. Therefore, patients aren’t talking to their doctor and getting the help they need before suicide becomes the only viable option left. This is a topic that needs to be talked about more and I appreciate Cake addressing it. Addressing depression and suicide ideation really is the only thing that movie did correctly!

I also believe that it is necessary for patients to be able to be honest about worries of dependency, tolerance, and addiction to opiates. By criminalizing opiate addiction, we have made it so that these patients, like Claire, cannot get the help they need. If Claire wasn’t worried about being judged or treated like a criminal she may have been able to get the treatment she needed for her opiate addiction.

Cake is Just Wrong

This movie genuinely had me in tears, and definitely not because it was a truly moving. So many people who were in my life have treated me like I’m Claire. They treated me like a drug addict for being in pain. This is how a big part of the world sees us. It already is terrible to be in pain every waking moment. Those around you seeing you in pain and still treating you like a drug addict due to the stigma behind opiates is even worse. I know for a fact that a portion of my family would rather see me screaming, crying, and writhing on the floor in pain rather than have me take opiates. For me, that is the most heartbreaking part.

So to Cake with all its misconceptions: Not all of us are in pain due to an accident. Not all of us are in pain because we aren’t working hard enough at rehabilitation. Not all of us will get any better. Some of us will get worse. It will not be because we weren’t trying hard enough.

We are nothing like Claire. We want to get better. We want it more than anything. We hate taking the drugs. We avoid them when we can. We don’t lie or manipulate doctors. We are not weak because we take medication. We are strong from the pain we have fought all these years.

Most importantly, we are in pain and every day is a battle. So give us your support, not your judgement.