5 Strategies to Master a Day at School or Work With Ehlers-Danlos Syndrome

Everyone who lives with Ehlers-Danlos syndrome knows that sometimes even getting out of bed in the morning can be a challenge. However, getting through a full day of work or school may seem almost impossible. 

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I currently only work from home and mostly on a flexible schedule which helps, but it still doesn’t solve all the problems related to pain, fatigue, brain fog, and other symptoms that come with EDS. Somedays, I feel so exhausted after taking a shower in the morning that I want to go right back to sleep. But I cannot because I have appointments I cannot miss, or simple responsibilities I can’t cancel. 

So I had to find my own strategies to get through the day without using up my spoons for the rest of the week all at once. This took time, some experimenting, patience, and the helpful suggestions by other people living with EDS, which is why we asked our community what ”hacks” or strategies to use to get through school or work while dealing with the challenges of EDS?

And this is what they shared with us: 

1. Pace yourself

Pacing is essential for most people living with a chronic illness. For me, this also means to pre-plan my day as much as I can. I think about the best time to take the metro so I will have a seat, I plan the cheapest time to take an Uber to a doctor’s appointment, and I always try to find the way that costs me the least amount of energy. What really helps me in the morning, is having a chair to sit in the shower. If it is warm enough, I let me hair air-dry because blow-drying is exhausting. Sometimes I have chairs in several locations in my small apartment, so I can sit down for all tasks. It’s the small things that sum up in the end and reduce the energy to get through school/work.

”I take small breaks through the day, so my joints don’t get fatigued.” – Melissa B. 

”I also take caution when I’m walking a lot, such as around campus, especially with hills/stairs, etc. I take the elevator when it’s available.” – Maelynn A. 

2. Change your position 

My pain levels increase if I stay too long in one position. Usually sitting is the most painful for me. So I arranged several different workspaces for my daily writing activities. I have a large desk, a couch, a bed, and a zero gravity garden chair if the sun comes out. I always find reasons to move around the house or walk around the block if my back starts to cramp. Sometimes, I even lie on the floor with my feet elevated on the couch to release pressure from the lower back. Sometimes I sit on my therapy ball which strengthens my back while I am working on my laptop. Nowadays desks can be adapted to any height which means you could stand or sit. These days there are even training tools you can use while you are working.

”I do sitting and walking at my job which I think helps.” – Melissa B. 

”At work, I always try to find something to do while I am able to sit, which therefore makes the pain in my legs less severe than what it could have been. At school, I have the opposite problem of sitting too long to the point of my joints locking up. So I try to fidget as much as possible, whether it be spinning back and forth on the office chairs or walking to the water fountain a few times.” – Kalee O.

3. Use supportive devices

With EDS we all are used to wearing braces to support our hypermobile joints. However, there are also really helpful devices to get you through your workday. What I absolutely love is my memory-foam seat cushion which is the only way to reduce neuropathic pain in my legs from sitting. Another great addition to my medical regime is my leg rest pillow which I use throughout most of the day. I always make sure my head and neck are supported whether while sitting in a chair or on my couch. Moreover, I wear compression tights which reduce symptoms related to dysautonomia and give additional support to my joints. I also use ergo pens or foam tubes around pens which make it easier to write on paper. And there are even ergonomic desk accessories. 

“I make sure I have my pain meds, heating pads, ice pack and topical pain relief on stand by.” – Melissa B. 

”Always have pain meds, support braces (in car), water, pain cream, etc.” – Maelynn A.  

4. Find your support system

When I first started to study, I had not much of an idea what accommodations I could request and whom to ask for in the first place. However, my tutors immediately got me in touch with the disability service of my university, and with a letter from my doctor, I was allowed to hand in assignments later if necessary and many other things that come in handy if you live with a rather unpredictable condition like EDS. 

“It’s so important to get into contact with student accessibility services for accommodations!” – Maelynn A.

”My friends. They are my support system at school; I wouldn’t get through it without them. If I’m exhausted I have a friend who will bring me coffee; if I miss classes I have friends who will tell me what I missed and give me feedback on homework; if I need to leave any medial supplies in their dorms they let me; or if I need a place to rest between classes they let me hangout at their dorm. These are just a few of the many things they do to help me get through, but I’m so lucky to have them. They are my biggest hack for getting through school.” – Emily S. 

5. Recover

This might sound like obvious advice, but I cannot stress enough about the importance of a good night’s sleep. I have a sleep schedule which I follow strictly. I go to bed between 10 and 11 p.m. and get up between 7 and 8 a.m. – except on a bad day. I use a u-shaped pregnancy pillow for support of my hips, knees, and shoulders. I turn on my air filter which not only cools down the room a bit but also eliminates pollen and offers white noise that makes it easier to sleep. Also, camomile tea or an Epsom salt bath help me to fall asleep on stressful days. Many people living with EDS have problems with sleeping. According to EDS expert Dr. Alan Pociniki, this cycle of bad sleep, pain, and exhaustion needs to broken by addressing all contributing factors simultaneously to gain function throughout daily life. You will need sleep to be able to recover from an exhausting day at your job. 

Working or studying while living with EDS is tough, and sometimes even with all medical devices, impossible. However, maybe you found some of the tips in this piece helpful to get through your day, and you should know that whether if you are working an hour each day, eight hours, or not at all, you are certainly an amazingly strong person to just get through your day with EDS. Never doubt that.