Several university students with ME/CFS who are currently housebound or bed-bound have asked me for quick solutions to get their energy and focus back so they can keep up with their coursework.
I got ME/CFS when I was 30, so I asked Vera, whose health unravelled while age 21 at university if she could provide some insights. Vera had very severe ME/CFS and IBS and was able to reclaim her life.
Liz: Should students with ME/CFS take a leave off university?
I’d love to hear your wisdom, as someone who’s health crisis began at university. (We Americans call it college, but I’ll use this ‘universal’ term.)
Vera:
This advice is for people whose illnesses started in university. If you’ve had chronic illness before university then doing a 50% workload or similar might be great for you.
My short answer is: Yes! I recommend taking off at least a full year to give your body a chance to heal.
One semester is too short, it’ll put too much pressure on you to recover quickly and skew the classes. You’ll feel like you only have 2 months to figure out your health, and that will put too much pressure on you! I tried to delay classes here and there, but then they didn’t match the schedule of the next semester, etc.
Take a whole year off, work on your digestion (finding a good Ayurvedic practitioner was essential for my recovery), rest and rejuvenate, and then see where you’re at a year from now. Find out what balance is.
Work on building a balanced daily routine that fills you up and makes you feel calm and joyful.
If you have extra time (aka, feeling better a few months before school starts), then I’d recommend spending this time on yourself, breathing and going inwards, reflecting on what you like to do and what you want to do with your life, explore new interests or rediscover old interests.
The job or program you’re in right now might not even be what you go back to, so I’d hold back on pouring that extra energy into it before you are absolutely sure.
What’s the point in recovering if you’re going to spend the rest of your life doing things you don’t want to do?
And if you’re feeling really crazy and can do so, then go traveling alone to somewhere peaceful and bring a journal with you.
Liz: Aye. No one I know who healed from ME/CFS says “I wish I held on to school / my job” for longer than I did (unless there was an issue with benefits).
Pulling back is essential to recover from post-viral fatigue and ME/CFS. Yet taking time off work or school can feel like a failure.
That’s why I think it’s so important to share our stories, and how taking time off for our health can actually be a good thing (and is not something to be ashamed about).
On that note, I found the way I spoke to myself and others about pulling back mattered. Instead of: “I’m suffering, so I can’t do anything anyone,” I learned to say, “I’m allowing my body to heal so I can come back stronger.” I think it’s helpful for parents to use this empowering language as well.
Vera:
Yes! I used to speak about it with such shame and guilt.
It was like I was apologizing to everyone else about how I couldn’t keep up. Truth is, no one really cares – in a good way!
I haven’t lost any friends from being out of school or even now as I have taken a different career path. Turns out they just liked my personality all along ;-).
Liz: From what I’ve heard, it seems like a common approach for parents with kids with “mystery illnesses” is to try to help their kids hang on at school (searching for medical cures, getting them a wheelchair, hiring a tutor). I suspect in the beginning most parents don’t even know what’s going on (why I refer to it as a “mystery illness” – what I called mine) and have never heard of post-viral fatigue or M.E.
Unfortunately, some parents don’t provide much help and just put pressure on their kid to “suck it up” so they don’t fall behind.
Does it mean that their kids were bad at explaining the post-exertional “crash” (the signature symptom of M.E.) and how pushing through can make one worse? And how mental exertion can be just as challenging as physical exertion?
Vera:
No, it doesn’t. All this pressure that I felt came from everywhere actually only came from my parents.
Looking back, my friends didn’t want me to push myself, nor counselors at the University – only my parents wanted me to risk my health.
If your parents are more concerned with you finishing your university degree than you being healthy and happy, please ask yourself if this sounds like love.
*whispers* it isn’t.
Would you ever ask someone to push themselves and be miserable and possibly risk their health deteriorating even more to finish university a year earlier? I don’t think so.
Why is your job so important to your parents? Status? Respect in their community? They should find other ways to gain this rather than sacrificing their child for it. Caring about a facade is a huge red flag.
Stay away from people who are willing to sacrifice your health and happiness for their facade.
Liz: Aye. If you’re 20 years old and have the stamina of a 95 year old and are struggling to read, your body and mind are telling you “no” and you need to rest. Yet you pushed yourself through classes with a fever and very severe bodily distress until you fully collapsed and ended up bed-bound for 3 years out of fear of disappointing your parents? [Vera explains this in in her powerful full recovery story.]
Vera:
Yes, and out of the fear they had instilled in me of what “falling behind” would do to my career, my finances, ability to buy a house etc. All bullshit, by the way. I’m doing great now!
They were always disapproving anyway, so there really was no point in trying to earn their approval and validation.
Liz: What advice would you give others recovering their health who have toxic parents like you did?
Vera:
Learn to approve of and validate yourself instead! The only person in life you really have to please is yourself.
Burn down that house of cards, dude! Crank up your self love meter to max and let everything they say go in one ear and out the other.
Remind yourself that everything they’re saying and doing actually has nothing to do with you, it is just them projecting their inner shit and self-hate onto you while they refuse to take responsibility for themselves and do anything about it.
Read books about toxic parents, healing childhood trauma and codependency and find a good therapist (not one your parents select).
I keep an updated list over books, YouTube-channels and resources that have helped me here: https://www.verawilhelmsen.com/resources
Also, having an e-reader made it safer for me to read all of these books while living in the toxic environment.
Liz: It seems like a lot of students and employees with ME/CFS take a middle approach. “Do whatever I can!”
From my experience, trying to hold-on part-time at my job when I had moderate ME/CFS zapped my energy and ultimately (despite some small wins) made me feel like a failure.
What is your advice to students who think a compromise of going to school part time is the best solution?
Vera:
I would definitely recommend allowing yourself to have some “extra energy” rather than doing as much as you can all the time.
It isn’t selfish to spend some time and energy on yourself and on fun and “non-productive” activities.
An affirmation for this is: “Even though I have this extra time and energy doesn’t mean I have to give it away to someone else or use it to prove I am good.”
[Liz note: ^This needs to be framed.]
I used to feel guilty if I spent energy on seeing friends when I couldn’t go to school. I would think things like “I could have studied for an hour instead”.
F*ck that! You are a super-valuable person even if you cannot “do” anything, work or study right now. Your worth is intrinsic.
Liz: Agreed. I think instead of course work – which gets graded and is about external validation and stressful deadlines – allowing your body to rest so you can come back stronger can be helpful in the long run.
Maybe learning a new skill might be in your mental and physical energy zone and bring you joy. But I’d reconsider anything that makes you feel any pressure.
I’m thinking of the time during a “good” period where I took an elective writing class, and a deadline felt like a bear chasing me in the woods contributing to a crash. I had to do a lot of work healing my brain’s flight or flight system and multiple other things to fully heal. And now I and am even more resilient.
Vera:
Yes, definitely remove all pressure while you’re healing! Do something that is so clearly unproductive and completely useless. I couldn’t even do painting or drawing because it added pressure.
I did read a lot of self-help books and books that accumulated the wisdom I needed to recover, but I made sure that when I was resting I only listened to fiction audiobooks. I still read the Harry Potter series over and over again, because I love it and there’s no “point” in it, so it’s relaxing!
You don’t have to watch “productive” TV either (documentaries etc), watch cartoons or your favourite childhood movies instead!
Liz: Love that advice. Okay – looping back. What if students do not have supportive parents? What do they do for living arrangements? They have no income. I’m not talking about well-intentioned parents who blunder. I’m talking about toxic, emotionally abusive parents like yours.
Vera:
If you have toxic parents, consider staying anywhere else. I didn’t think I had any other choice than staying with my emotionally abusive parents, but this made my health so much worse and made the time spent on being sick at least 10 times longer than it could have been.
Please consider this when thinking staying with toxic parents to recover is a good idea. I truly believe that if I had moved out when I thought I was too sick to move out – that my health would’ve quickly increased to a level that made me well enough to live on my own. I would’ve been able to work earlier if I had stayed anywhere else.
Staying in that stress is making you and keeping you sick, so I’d consider taking the risk of living on your own or living with a friend, even if you feel too sick for it.
Staying anywhere else and struggling would have been better for my health.
Liz: So are we suggesting people who can’t fend for themselves go camp somewhere if they have abusive parents? I have many disclaimers on my website and trust our readers will make the decision what’s best for them.
It seems there are different ways toxic or non-supportive parents or authority figures can be harmful to healing. Including telling a child they’re making it up and dismissing their struggles (making them feel they have to prove themselves – which requires lots of emotional and mental energy), or on the other hand depriving them of any hope for healing.
I listened to a woman’s recovery story who was mostly bed-bound with ME/CFS from around 11 to 18. She appeared to have a limiting parent. I believe she was able to go to Hawaii and work for little pay on a farm, and despite more physical exertion, was ultimately able to thrive on her own terms with all the emotional burdens removed. She ultimately was able to swim the English Channel and is continuing to live her best life two decades later.
Many people with ME/CFS, however, feel stuck in a stressful home environment (not just students – also parents with young children, etc.).
Vera:
I wish I could keep you all in a healing camp in my backyard, lol, but I can’t.
I have thought about having a beautiful Ayurvedic healing center where it would be possible to stay for months someday. Since I know how it feels to be sound- and light-sensitive I do know how I would like to build these rooms.
You have to follow your own intuition and do what’s best for you.
All I can do is share my story and what I’d wish I’d done differently. If it isn’t relevant for you, then please disregard what I say.
You can also try to build up your health and strength before you move out.
I did Ayurveda which improved my digestion and energy levels. So I left after I already felt better physically. I also had the opportunity to save up some money, as I was receiving welfare but didn’t spend anything as I was only in bed. And I also purposely saved as I guess I deep down had the feeling that I would soon need this money.
Are there any funds from your school or government you might be eligible for? Do you have any friends or relatives that might be able to help you? I’d tell my younger self, “Don’t hesitate to ask for outside help.”
Liz: One of my “dreams for people with ME/CFS” beyond just more research funding and a better standard of care, is this kind of healing place you mention to exist. So people can get away from it all and help their bodies heal. It seems like many of us who have healed think the same thing.
In the US, we have currently have little social support options, particularly for university students who get sick (since benefits are tied to age and employment), so other avenues are needed. And these avenues may involve reaching out to friends and relatives for help as you also mention.
Liz: I want to now talk about the middle ground, where I’m sure a lot of students fall into. How can students recovering from ME/CFS support their wellbeing while living with “well-intentioned parents who frequently blunder?”
Vera:
Hahaha. Yes, I would still take the time to learn about healthy relationships, how to fully be your own person, boundaries, and enmeshment.
If the relationship is causing you stress then there is definitely something that needs to be worked on. And it might not even be so difficult to fix, maybe if you are able to pinpoint the problem, the pattern or the dynamic and then have a talk where you set a boundary – it might relieve a lot of stress.
You can begin saying something like “you know that they’re doing this out of love, etc.” before you set the boundary.
If your parents are truly well meaning then I would begin with acknowledging their love and all they do for you, and then tell them how this specific thing isn’t working for you and how you feel – and they’ll most likely want to work on this with you.
But if they throw a fit and become the world’s most dramatic martyrs or yell at you- then please refer to the toxic parents category, lol!
Liz: So you were an engineering major because that’s what your parents wanted. You are now pursuing your dreams. How did you get to that place?
Vera:
A big part of me was and still is interested in chemistry and finds it very fascinating, but the whole gig was just ruined by toxic pressure and lies. Now I am fumbling my way into an authentic career.
You may need to learn a new skill from scratch. You may fail. But isn’t it better to cut your losses this early in the game rather than 10 years from now, when, if by some miracle you were able to recover and finish this degree, feel miserable and trapped, and wasted more years?
Cut your losses, take time to heal, and find your true calling now rather than later.
This was my case: it was impossible to recover while studying chemical engineering, because it was part of the reason I was sick. You need to reflect upon if you are trapped in a similar situation.
Look inwards and find out what you truly want in life.
What gives you joy and energy? What makes you lose track of time? Because when you recover you will want to pursue these things, not the people-pleasing goals you used to have.
For me this is writing, filming and editing and it has been this way since middle school, I had to suppress these interests.
(By the way, there’s nothing wrong with engineering if you do it for YOU.)
Liz: The stuff you said resonates. Many of us who got CFS at age 30+ were caught in a stressful career, because of what we thought our parents and society valued (just from a nature to please or impress them).
Then we lost everything. Your advice is so important for the long game.
You and I have talked before about how we’re more in touch with our inner child these days – both of us were creative storytellers. How are you in touch with that now as an adult?
Vera:
Beautiful question!
I lost myself somewhere in childhood, so to get myself back, I have to pick up where I left off.
(I have to give credit to my boyfriend for this sentence, beautiful right?) – which means picking up my childhood interests, favourite colors etc. Turns out that these haven’t changed!
I still love writing, filming and editing. And the color pink, lol.
I’m currently am in care-work, but also working on creating time for myself to write more and make videos.
I’m not doing only one thing on my YouTube channel, I want my channel to represent who I am as a person, and I feel like there is room for as many interests and aspects of me as I want. I’m therefore not only making videos about ME/CFS and Ayurveda, but also minimalism, capsule wardrobes and spirituality!
Liz: This journey in itself has also changed the way I look at life and my career path. I used to be all about competition – now my focus is inspiring others and working with others in alignment to help people with ME/CFS reclaim their life.
I’m also glad to see you re-integrating into the “real world,” learning more about yourself, and doing it on your terms.
You are an inspiration to me.
Vera:
Thank you! Now my focus is inspiring and helping others while also being true to myself, having fun and enjoying the process (not stressing about it or pressuring myself)!
Liz: I can’t wait to visit your Ayurvedic healing clinic in Norway one day, and look forward to more amazing content on your YouTube channel.
Vera:
Yas, then we can film some videos and go on adventures, too!! Can’t wait!
Here’s a new video from Vera’s channel on what to do if you get sick in university:
Read Vera’s full recovery story from CFS/ME to learn how stress can drive chronic illness, how she broke free from an emotional abusive environment, how she used Ayurveda to heal her digestion and health, and how she’s living a vibrant life on her own terms!
Liz’s final thoughts
I realize we don’t often hear about the stories of the people who got very sick, pulled back early on, and who averted getting “chronically” ill altogether.
So I wanted to share two, in case you made it this far. One a friend-of-friend who collapsed in secondary school, who rested for 6 months and fully recovered before “it” was even given a name (ME/CFS requires 6 months of symptoms for a diagnosis).
Another is a close friend of my husband’s who collapsed in grad school (he was running on coffee, adrenaline, and very little sleep). He stopped his research and just relaxed for an entire semester and summer (it’s easier for PhD students to take time off). He fully recovered before “it” became anything, though never touched caffeine again. He’s very successful (if that matters to you), happy, healthy, doing what he loves, and has a wonderful family.
Pulling back when our body asks for it – whether at school or at work – seems to be helpful for the long term. Nothing is worth more than our health!
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