Navigating Work With POTS
Read brave and inspiring stories from POTSies who have shared some of their experiences.
If you are interested in submitting your story, you can access the submission form here.
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Click here to read about our community member, Michelle 
Did you have a different career plan before you developed POTS?
Yes. I was a CNA and I went through all the pre-requisites for nursing and got accepted into a nursing program, but I had to drop out. Now I'm in a wheelchair and just don't feel like I could make a good nurse.
What do you currently do for work?
I work from home as a marketing assistant. I have a computer setup that mounts from the ceiling and can be positioned where I need it like a dentist light. I'm able to use it sitting in my wheelchair or lying down in bed, which is how I usually work. Being able to work from home and from my bed has been a game changer for me. I do go into the office for meetings sometimes and I go on business trips in my wheelchair from time to time, but most of my work is done remotely. That has been such a blessing for me.
How have you been able to work while also navigating POTS?
I got laid off and was without work for about 9 months, but otherwise, I've been able to stay employed throughout my 6 years of being in a wheelchair due to POTS. It wasn't easy, but I'm pretty stubborn and refused to give up. Even when I was unemployed and had to get state benefits, I never stopped looking and applying for something my body could handle.
What have you learned during your journey?
I've learned to take things one step at a time, and to not let other people's fears hold me back. I'm the only one who knows what I can and can't handle. I've learned to go ahead and take the (reasonable) risks if it will help my mental health. I've also learned to accept whatever tools (wheelchairs, canes, crutches, etc.) are available that will make my life easier. There is no shame in accepting help!
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
Don't give up. Maybe you will have to change your plans, but sometimes Plan B works out better than you could ever have imagined.
How have you navigated getting the accommodations you needed?
I am honest about my needs but not demanding. People are way more likely to be accommodating if you try your best first and request what you need respectfully.
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Click here to read about our community member, Hannah
Did you have a different career plan before you developed POTS?
Yes, I was working as a vet tech and was studying to be a registered veterinary nurse.
What do you currently do for work?
Client Liaison at a Veterinary emergency room.
How have you been able to work while also navigating POTS?
Always go into work prepared! I keep a bag with me full of electrolyte mixes, nuts and other salty snacks, water, a pulse oximeter, cooling/hot packs, a headache hat (for really bad flare up days).
What have you learned during your journey?
I have learned to be kind to myself. I’ve always had a go getter mentality and being easy on myself doesn’t come naturally to me. I’ve learned to pat myself on the back and remind myself; I am enough and I am doing enough. I am doing my best in the face of adversity. Pots can be unpredictable and every day looks different. It’s an invisible illness and unfortunately, others don’t always understand what we go through on a daily basis. The key is to allow ourselves to rest when we need it, practice self care, and be kind to ourselves.
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
It is okay if you need to take the time to care for yourself. I’ve needed to take time off of work due to my condition, and learned that above all, it is important to put yourself and your needs first. If that means you cannot work, that is absolutely okay, and I am proud of you for putting yourself first. If you find yourself needing to change career paths; I’ve been there, and it can be scary at first. The unknown is sometimes tricky to navigate. Take a step back and ask yourself; what is something I could see myself doing, a field perhaps that I’d enjoy working in, that won’t cause me too much discomfort with my symptoms? Personally, I knew I wanted to work in veterinary medicine, but I had to take a step back and decide that admin work in the vet field would be less taxing on my body than continuing as a vet tech. If you are considering going back to school, or taking up a new skill/a totally different type of work than what you previously did, go for it! Whatever you decide to do, be proud of yourself, you got this!
How have you navigated getting the accommodations you needed?
Documentation from your physician is really helpful prior to discussing accommodations with your manager. I find it helpful to first speak with your provider about accommodations you need, collect documentation (a note, etc), then have a candid discussion with your manager. It can be helpful to write down/rehearse what you need prior to speaking with your manager. Don’t be afraid to advocate for yourself in the workplace, working with pots can be a lot, and you deserve to care for yourself.
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Click here to read about our community member, Erika
Did you have a different career plan before you developed POTS?
I was an EMT (Emergency Medical Technician) and I was studying to become a paramedic but had to stop because POTS was getting in the way of school/work.
What do you currently do for work?
I'm currently on disability but looking into training for 911 dispatcher.
How have you been able to work while also navigating POTS?
While I haven't been able to work just yet, I keep up with my appointments and treatments to get my POTS under control so I can go back to work. I'm also learning my limits and listening to my body.
What have you learned during your journey?
I truly learned what taking it one day at a time means. Just because I can do something one day doesn't mean I'll be able to the next, and I'm okay with that. It took me a long time to accept that but I can promise you it does come with time. I also learned there are so many things I love to do that are easy on my body and I can even make a career out of if dispatching doesn't work out.
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
Be patient with yourself. Just like anything else, you learn to adapt. Make a list of things you enjoy doing that are easier on your body or do research into jobs you might be interested in that can make better accommodations. There are always more options out there.
How have you navigated getting the accommodations you needed?
Personally I couldn't get accommodations at my previous job just because of the type of work it was. Being an EMT is a very demanding job, both physically and mentally. In that case, I had no choice but to quit so I wouldn't be putting my partner, patients, or myself at risk.
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Click here to read about our community member, Megan
Did you have a different career plan before you developed POTS?
Yes, I wanted to join the FBI. I can’t meet the physical fitness requirements now with POTS and other chronic illnesses.
What do you currently do for work?
Behavior therapist.
How have you been able to work while also navigating POTS?
I struggle with my job due to the physical aspects and am looking for a job that doesn’t have these obstacles.
What have you learned during your journey?
Asking for accommodations is okay, needing extra help doesn’t make me bad at my job.
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
See a therapist. This is helping me so much. There’s grief involved with needing to change career when you develop more serious chronic illness and those emotions are complex. It helps to have a professional to help you process it all.
How have you navigated getting the accommodations you needed?
Doctors notes and advice online of suggested accommodations.
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Click here to read about our community member, Nicole
Did you have a different career plan before you developed POTS?
Yes! I was an inpatient nurse and after being diagnosed with POTS I was unable to continue working inpatient. The 12 hour shifts, pushing beds, constant stress, little to no breaks, and standing often was horrible for my body.
What do you currently do for work?
Registered Nurse in outpatient clinic.
How have you been able to work while also navigating POTS?
Yes now I can! After months of fighting with my job to get a reasonable accommodation, I finally applied for an outpatient position and got the job! I have been able to now work 4, 10 hour shifts in a row with no symptoms.
What have you learned during your journey?
I have learned to be patient with my body. I also have learned my triggers and what helps me. For me, working out daily helps me with my symptoms. I take salt tablets, wear compression stockings, and drisetnk 2-3L of water daily. I am on an amazing medication regimen and haven’t fainted since May! I used to get IVIG and IV fluids and no longer need them weekly! I am not where I thought I would have been a year ago and hope to continue to improve yearly! I also don’t get down on myself for setbacks or bad days. I allow the bad day and know tomorrow will be better.
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
I would say honestly do not beat your self up about it. I was not ready to give up inpatient nursing but my body was fighting me. Once I listened, I felt so much stronger than before. I think I would offer someone to take things day by day, use your work as a support tool and know when you need to take breaks. You can do any career your mind is set to, just be patient with yourself and believe you can do it!
How have you navigated getting the accommodations you needed?
This was a tough battle for me. Unfortunately my employer was not accommodating when first diagnosed with POTS. I advocated for myself and was able to start by getting a light duty assignment which turned into my current position now. I have a beyond amazing care team of a PCP and a dysautonomia specialist who advocate for me frequently. I am open with my co-workers and management. I have FMLA if I need a day or feel like I am having a flare. I have shared my story and have received empathy and support. I am lucky because this was not always the case!
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Click here to read about our community member, Alyssa
Did you have a different career plan before you developed POTS?
Yes.
What do you currently do for work?
Clinical Trial Specialist.
How have you been able to work while also navigating POTS?
Working remote has been essential. On bad days I work from bed or even from the ER while waiting for IV fluids. Going into an office when I am in a flare just became unmanageable. Remote work is the biggest positive that came out of the Covid-19 pandemic.
What have you learned during your journey?
To give yourself a break if you life doesn’t look exactly as you imagined it. Also to be very honest about this disability even if you are able to hide your symptoms. Don’t hide your symptoms for other people's comfort or benefit.
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
You might have to change career paths. My previous several ideas of what my career path would look like have had to be adapted after POTS. There are plenty of industries that are fulfilling and are more conducive to the needs of POTS patients.
How have you navigated getting the accommodations you needed?
This is a difficult question. Really fighting for the accommodations you need means you will have to be your own advocate and expend a lot of energy so just be prepared for this and fight for what you are entitled to.
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Click here to read about our community member, Angela
Did you have a different career plan before you developed POTS?
I was in a Global Vice President of Human Resources and E-Commerce Operations role at the time of diagnosis. I worked very hard over the years to make it to the Executive level, but POTS came into play. It made me re-evaluate all aspects of my life including work and I realized I needed to take on a different role where I could focus on my passion, Human Resources.
What do you currently do for work?
Director of Human Resources where I am solely focused on Human Resources.
How have you been able to work while also navigating POTS?
Early on when symptoms came on, I had 10 ambulance rides and 30 ER visits. I was fully work from home at the time so my schedule could flex. I had a little bit of time off when I was admitted to the hospital for a few days, but I navigated through by working from home. My role currently is four days work from home and one day in the office. I am able to go into the office, which has been a huge accomplishment for me. It’s exhausting to go in and I utilize a lot of spoons, but I am getting stronger.
What have you learned during your journey?
I have learned so many things and I continue to learn. My biggest takeaways have been to be my own advocate, fight for myself, be transparent about symptoms, be proud of how far I have come and finally that many people don’t understand chronic illness. Additionally, I have learned to listen to my body and give myself time to rest and recover. I have also learned how important it is to share my story as it might help people ask more questions and get to a diagnosis more quickly.
What would you recommend to someone else with POTS who is concerned they may not be able to work or may have to change career paths?
It can feel really scary to not be able to work or to have to change career paths. I would say keep an open mind and remember your body, health and wellness need to be your number one priority. Be open to new paths and embrace change - it could be an overall better path for you. Celebrate any size win and do things that you love to do. Sometimes a new path is a blessing in disguise.
How have you navigated getting the accommodations you needed?
I have been very transparent about my chronic illnesses and will ask for what I need. Being in Human Resources, I have a strong understanding of my rights and what types of reasonable accommodations are available to me. I think it can be scary to discuss your illnesses, but I am hopeful more and more Managers will be understanding and supportive.