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When “lymphie life” and “office life” collide: Managing lymphedema in the workplace

Adjusting to a new job can be difficult, especially when living with a chronic condition.

The blog has been quiet lately, but with good reason: I got a new job!

I began last fall with the marketing and communications department of a large health care system and I love it, although since I’ve started, I haven’t had time for much else. Now that a few months have passed, I’m slowly but surely getting things settled into a routine – including my lymphedema.

Adjusting to a new routine

Before starting the job, I was a little nervous about how sitting at a desk all day would affect my swelling. I’ve mostly worked jobs where I’ve had time to recharge and elevate between shifts or during days off: I’ve cleaned houses and hotel rooms, baked pies, sold antiques – but a professional, full-time office job with a regular schedule? Totally new ground for both me and my leg.

To prepare, I revisited a post my lymphie friend Grace wrote on her blog a few years back called “A Lymphie’s Guide to the Workplace” – an awesome resource with lots of great tips for desk-bound lymphies.

I also made sure to get the appropriate accommodations cleared with my new employer, who provided me with a footstool so that I can elevate beneath my desk.

the-lymphie-life-under-desk-footstool
My under-the-desk elevation station.

Despite all the prep, I still had some concerns. Here are four worries I had about managing lymphedema in the workplace, and how I’ve adapted over the months since.

1. Sitting at a desk all day long

Unlike the cardiovascular system, the lymphatic system doesn’t have a pump to keep lymph moving: instead, it depends on one-way valves and the movement of surrounding muscles and joints, whose contractions help push the fluid up to the subclavian veins at the base of the neck where the filtered lymph rejoins the bloodstream.

Needless to say, sitting all day long with a compromised lymphatic system puts a serious kink in the hose and can aggravate existing swelling.

Solution: Get up from my desk every hour or so. Whether it’s a walk to the bathroom (my coworkers must think I have the tiniest bladder!) or to the kitchenette to refill my water bottle, I gotta get up and move my lymph.

Standing also helps. I recently asked my employer for a standing desk converter, and being able to alternate between sitting and standing has been such a huge relief. Not just for my swelling, either: sitting for too long makes my compression garment pinch behind my knee, and standing alleviates that for me.

Sometimes short walks and standing at your desk aren’t enough, though. If you’re inclined to give it a try, there are exercises you can do at your desk as well as decongestive and breathing exercises specific to lymphedema, too.

2. Wearing compression at work

It’s weird: I’ve reached the point where I’m okay with wearing my compression openly out in public, yet I was suddenly nervous about wearing it around the office. I guess it’s because these wouldn’t be passing strangers, but rather people I see every day. Would they notice my leg? Would they care?

the-lymphie-life-alexa-wearing-compression-at-work

Solution: Remind myself of my priorities. My health and physical comfort comes before any worries about what other people may think. For better or worse, my lymphedema is a part of me, and that means my compression garment will always be a part of my outfit.

So, I’ve been wearing my compression garment – sometimes openly, other times hidden by longer pants – and everyone has been great about it. (Some I think haven’t even noticed!) Either way, I’m happy to lymphsplain when asked about my leg: working in the medical industry means my coworkers are not only understanding, but are genuinely curious to learn about it.

Plus, I like the idea of normalizing the sight of someone wearing a compression garment. Maybe one of my coworkers will see someone wearing compression out at the grocery store or walking down the street, and now they’ll be able to recognize it. How neat is that?

3. Physiological effects

Before starting the job, I was concerned what physiological effects this change in routine would have on my swelling. My lymphedema can be sensitive, and there was a definite period of adjustment during the first week or so where both legs were noticeably puffier.

Solution: Paying extra attention to my lymphedema limb and responding with action. Is it feeling denser than usual? Heavier? Is there a dull aching pain, or pins and needles? If I notice anything that feels different than my baseline, I try best I can to address it, be it by elevating, going for a quick walk, or using my compression pump when I get home.

Oh – and drinking water. Lymph fluid has a high protein content, so staying hydrated is crucial for lymphies as it helps flush out the excess protein from tissues.

4. Time management

Work, the blog, time with friends and family, errands, housekeeping, lymphedema treatment… it all starts to pile up after a while, and it’s unavoidable that one area of life (or two, or three) eventually falls by the wayside.

Living with a chronic condition like lymphedema means we have to be intentional in the choices we make around how – and on what – we spend our time, because when we get overwhelmed and worn down, our health usually gets worn down, too.

Solution: I’m still figuring this one out. There’s a lot I’d like to do, but I don’t always have enough energy or time to do it all. A good planner helps me stay organized, but the biggest thing for me right now is being mindful of not spreading myself too thin; I’m no good to myself or anybody else if I’m sleep-deprived, cranky, and stressed out.

Like I said, time management is still a work in progress for me – but then again, so are most things!

the-lymphie-life-in-progress-file

How about you – what are some ways you manage your lymphedema in the workplace?

15 comments on “When “lymphie life” and “office life” collide: Managing lymphedema in the workplace

  1. I have a stool under my desk to put my leg up, and try to get up and move around frequently. A lot of this is due to drinking a lot of water, so I’m either going to the bathroom or re-filling. I try to take the long way around to the bathroom, and occasionally I’ll do squats or stretches at my desk if I’m stuck there for a long time.

    I’m a journalist, and I have an extra set of bandages under my desk in case something huge happens and I’m stuck in the office for an extended period of time. (After the big quake in 2011, I couldn’t get home for 36 hours – and since at that point I was pre-diagnosis, with no compression, it really did terrible things to my leg to work so long and hard.) I also have a little first-aid kit in a drawer with bandaids and bacitracin, in case I get a cut.

    I definitely don’t move enough, though. I was working at the Olympics in February, which required a lot more walking around and stair-climbing, and my leg remained quite small for the first week. (After that, the long hours and lack of sleep took a toll.)

  2. Also, congrats on the job!

  3. I started working in an office immediately after my last episode of cellulitis, 13 years ago. I went to a lymphodema clinic and was given stockings. I have been wearing them every day since. My choice of dress is pants or a dress over the knees. I have a footstool that I could move up and down like when you tap your feet. I have found office work best for my legs I am not on my feet constantly, but I can get up every hour or so for some reason. I believe the stockings have saved me from another episode of cellulitis. Don’t be ashamed to wear them! They are cool! (Yes, they are expensive, annoying, sometimes hot, and a pain to put on after a shower, but they are my friends.)

  4. Hi!
    I’m still in nursing school and completing my 12 hour clinicals in the beginning was really tough. My leg would swell and my feet would ache so much after I got home. I would usually just elevate them for the rest of the night..then I found my passion for compression stockings!! Turns out, almost every nurse and doctor wears compression stockings. I’ve even seen some comparing whose stockings were the most colorful! I found a pair of strong compression stockings that are made out of cotton rather than the itchy synthetic material and it has made a world of a difference with my leg.

  5. Hey there! I have lymphedema in my left leg and arm – cancer treatment back in 2009-2011. I am sooo new to all of this so I find your blog to be a huge help in general, but this post is perfect! I am finishing the acute phase of my treatment this week and got fitted for my garment yesterday. I was feeling pretty down about the less-than-fashionable alternatives and worried about heat (I live in FL). I am a bit anxious about the life-style changes and my job is demanding and public so I was really concerned with appearance and what to say to others. (Wow, I just realized as I typed this how many worries I am carrying around!)
    I think that being in the acute phase with the bandages while working has helped me to immediately figure how to handle the questions – as a matter of fact I put a picture of the MIchelin man on a slide presentation I was giving the day before my first treatment and said, “If you happen to see me tomorrow I will resemble this guy. No worries, I’m fine! Just in treatment for a complication that has appeared as a result of the cancer treatment I had several years ago.”
    I’m working on my office set up and wondered if you considered one of the mini-ellipticals for under the desk versus the stool to elevate? I am desperately trying to find ways to move as I work as I can be chained to the desk for hours at a time if my appts are back to back.
    Thanks for all you are doing!

    • Hi Marcia, I have also recently developed some swelling in my leg where I had cancer surgery many years ago. Doctors are saying it is normal but I am concerned it would get worse if it is lymphedema. I would be very grateful if you could share some of your experience with me? Thanks and take care!

  6. I was diagnosed about r years ago with primary lymphedema. I work as an accountNt, so I’m at my desk all day. I do try to get up several times a say, but these days I don’t m legs feel very heavy. I wear my custom compression stockings all the time, even with shorts. They are part of who I am and they have never defined who I am.

  7. When I worked at Sandia National Labs (I retired in 2009 after 32 years service), managing my lymphedema was a big challenge. I used a foot stool to elevate my leg; I even had the ergonomics department evaluate my work area to try and design a way for me to work with my leg elevated in a recliner chair. I had to set a timer for 60 minutes to make sure I got up to walk around.
    After retiring from Sandia, I began a second career as a teacher. Again, it is a challenge to not stand or sit for long periods of time.

  8. su carey

    Soon after starting a new desk job, my supervisor gave me the task of filing medical charts. This meant I had a lot of arm stretching. Even after just 1 hour my hand and arm were huge, and I was wearing my compression sleeve. . When I mentioned my condition, even in this medical admin office, my supervisor was surprised and ignorant of the symptoms. In order to shorten my hours in the file room, I was required to declare a disability. Finally I had to leave that job. I am happy to see others are working on solutions that can keep them in the work place.

  9. nancyspoint

    Hi,
    Excellent post. “My health and physical comfort comes before any worries about what other people may think. For better or worse, my lymphedema is a part of me, and that means my compression garment will always be a part of my outfit.” Well stated.

  10. Laurie Eisenbraun

    Hi,

    I have lower body lymphedema. When I went back to work I took two copy paper boxes and duck taped them together. I then wrapped them like a Christmas present with a piece of dark upholstery fabric. I put a small pillow on the boxes to support the bend in my knee. It works really well.

    My employer has biked desk that I can ride. It has been a wonderful way to keep the fluid moving out of my legs and back into my torso.

    • Hi Laurie,

      You mentioned “bike desk”…is that a full bike /desk setup? That’s interesting. I wonder if those small under desk pedal things might work too-any thoughts?

  11. NolaLynn

    Congratulations on your new job!

    I have been living with lymphedema since high school (I am middle-age), and I am still navigating the complexities of the disorder (I think you are calling it a disease). I have worn compression garments every day for decades first of all because my lymphedema requires it and, second, because it is more comfortable to wear the garments than to try to survive without them. I wear Sigvaris 20-30 sheer pantyhose 6 days a week, and on Saturdays I typically wear an open-to knee-high on the worst leg. If I am doing a lot of work – spending a day in the kitchen, painting a room, working on my container garden for hours, or hiking for a long distance, I will wrap my leg with compression bandages. I am usually pleasantly surprised at the end of the day to unwrap an almost normal leg – what a gift!

    My work requires that I move around a lot (I manage a property, and I can easily walk 3-5 miles a day), so I am fortunate that I am not glued to a desk, however, until four years ago, my work was primarily conducted at a desk. I made(make) it a point to get up and take a walk a couple times a day, and I kept (still keep) footstools and leg rests under my desk. I also use a laptop computer so I can sit wherever I want when I work, and I often sit at my table where I can rest my leg(s) on a chair.

    Today was one of my worst days for swelling, and I acknowledged before I left work that I needed to spend the evening with my legs elevated, hence the research this evening that led me to your blog. It’s been a long time since I spent time researching the disorder…

    Good luck in your job!

  12. Thank you so much for sharing this story.

    As a Certified Lymphedema Therapist I am often advising people on how to make accommodations to help with their lymphedema in everyday life. I put information up on my own page https://haltmyswelling.com/resources , but that is still ‘just information from a therapist.’ It means so much more when it comes from someone who has lymphedema and who is figuring it out for themselves. This post is truly inspirational because it shows that regular life is possible and that, as you said, your health and well-being come before fashion and what people think.

    Thanks again for sharing!

  13. Pingback: Facing fears – and facts – at my yearly lymphedema check-up | The Lymphie Life

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