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What’s It Like Going Back to School as an Adult with Disability and Chronic Illness

What's It Like Going Back to School as an Adult with Disability and Chronic Illness

Going back to school as an adult with disability and chronic illness wasn’t something I had in mind – at all. But a lot has happened this year for me. For those who aren’t aware, I suffered a spontaneous bilateral patellar tendon rupture in January, which left me suddenly disabled and completely bed-bound for several months.

During that horrible downtime, I decided to try my luck and apply for a degree in Linguistics and Multilingual Studies. The application fee was just $10, and I had a lot of time to fill in all the pesky paperwork, right? Who knew, but I got accepted into the programme. So it seems like I’m ticking a big one off my bucket list and re-inventing my life, albeit with broken body parts, work, chronic pain and whatnot.

I’ve been back in school for about two months now, and the commute kills me more than the lessons themselves. It’s an hour’s drive each way, and I need to go to school four times a week. If you include the infamous chronic illness ‘morning wake up prep time’, it really adds up. Most of us with chronic illness or disability take at least an hour or two to get up to speed every day, even on a day with no commitments.

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Back to School as an adult with disability and chronic illness [Background - Young girl carrying files, bag and pointing to text above]

Tip #1: Pace Yourself: Listen to Your Body & Inner Child

The Extra Responsibilities of Being an Adult

So having said all that, my first tip is to pace yourself and accept help. School is hard, and even more so if you’re in a full-time programme. As an adult, you’ll probably still need to work to support yourself. I don’t have much savings at all because being chronically ill costs money. A lot of it.

Like many others with chronic illness, I can’t hold down a full-time job either. I always end up falling very ill about three months in. Stress kills, but if you’re healthy that can be hard to see immediately. With a chronic illness, you literally feel the stress as it causes physical pain.

You might also have your own family as an adult, which would add more responsibilities to your plate. I once had a colleague whom I worked with full-time, and she was pregnant and studying at the same time, too. A healthy, functioning body is always a marvel to me, although you must admit that that takes quite a bit of grit to do regardless!

The big question – How exactly do you pace and what does that even mean in this context? How do you enable yourself to do what you need and want to do?

What is Pacing & How Do I Pace Myself?

In basic terms, ‘pacing’ means paying close attention and listening to your body and inner child. It’s intuitive in nature, but many of us have silenced their voices for so long that we don’t recognise them anymore.

“In basic terms, #pacing means paying close attention & listening to your body & inner child. It is #intuitive in nature, but many of us have silenced their voices for so long that we do not recognise them anymore.” #ChronicPain #SelfCare Share on X

I actually think I’ve gotten better at listening to them of late. Sometimes the thought pops up in my head, “I’m boooored”, or “I’m tiiiired”, and I notice it immediately.

That’s my inner child whining – and for good reason. So I stop whatever I’m doing if that’s possible, and do something else instead. For example, I may be reading my English textbook, and I hear “I’m tiiired” in my mind. I then stop to ask myself, “Do I really need to finish this chapter right now, or can I continue tomorrow instead?”

Often the answer is tomorrow, so I force myself to close the page. This has always been difficult for me to do. I hate leaving tasks left undone, and like to squeeze everything in at a go. But when you live with chronic illness, you learn how unsustainable that is. It never was quite ‘me’ to pace, but I am left with little choice. Pace, or pay the price of pain.

I’ve learned to be better at pacing over the years. The thing is, I’ve been pacing school pretty well, I think, but am still running (ha!) into endless pain flares regardless. I suppose I’d be in a worse state if I hadn’t paced, though. One bonus of pacing – you’ll be able to absorb the information much faster and more easily after you’re well rested. So it’s really more productive in the end.

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How to Pace Yourself as a Student with Chronic Illness or Disability [Background - A finger pressing a keyboard key that says 'studies and research']

Spread It Out if You Must

There will be periods where pacing might not be possible, such as when you have a group project deadline, or an upcoming exam. But what I’m talking about is an over all pacing strategy for your entire study years. If that means that I need to study on the weekends too, that’s okay. I find that easier to cope with as compared to doing homework on days where I need to go to school. I’m usually bushed by the time I get home, so it actually takes more effort to process the exact same information.

Remember – this is a course you probably chose to study because you’re passionate about it. So if you want to get it done, then some things need to go or be re-arranged.

Don’t Forget Self-Care Time

That doesn’t mean you need to or should sacrifice all your weekends and personal time either. Don’t forget to schedule in social and downtime, too. Watch a good movie in the evening, or slot in a meet up with a friend on weeks where you’re feeling better. Take your dog for a walk. Pull some weeds out of your garden. These all count as downtime that helps to revive and refresh you.

As for hobbies, I’m sure you want to keep them going to some degree as well. We all need some ‘me-time’ after all. Otherwise, you might burn out and grow to resent what you chose to do in the first place – go back to school as an adult.

For me that’s mostly writing and blogging for now, as my activities are fairly limited with the broken knees. So that’s probably how I managed to churn this post out despite my schedule being packed to the brim! Extreme pain and exams have made me cancel a few meetups with friends, but I try to reschedule them when I feel better. It’s important to maintain some level of social connection for your mental well-being as a human being.

Obviously, studying is stressful and will lead to some unavoidable pain flares. Sometimes, I wonder why I chose to torment myself. If I didn’t have school to attend or homework to do, I can take my time to rest and heal. Instead, I’ve been sitting on my doughnut cushion, and relying on pain meds to get through the past few weeks. There is little choice when there are tests and exams.

I no longer take myself on a guilt trip when I need to rely on these medications. I’ve come to realise how silly and futile that is, when I live in endless pain. They’re available to me for a reason. I still need to live my life, and they help me to do so. End of story.

“I no longer take myself on a #guilt trip when I need to rely on these #medications. I’ve come to realise how silly & futile that is, when I live with #ChronicPain..I still need to live my life & they help me to do so. #EndOfStory.” Share on X

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The Importance of Self-Care as a Student with Chronic Illness or Disability [Background: Collage of young girl with illustrated sun and plants in the back.]

Tip #2: Accept Help with Grace

The biggest help for me has been someone loaning us a car, and my dad driving me to school with it. It is an hour’s drive each way, so a cab is expensive. Public transport is too exhausting for me, especially with my physical disability now. It’s also full of germs. Even before COVID, I would often get sick from inconsiderate passengers. It’s also more relaxing being driven by someone familiar. I can eat my breakfast or lunch whilst commuting, listen to music, and relax for a while. I can’t do that in a cab.

You might need to be wheeled around in your wheelchair, need someone to assist you in the toilet, or carry your bag. There is no need to feel embarrassed or humiliated. Accept the help, and focus on what you came to school to succeed in. As I always say, we all have different lots in life. So give generously whenever we can, and receive what we need with grace. Return that kindness in ways that only you can give to the world.

“We all have different lots in life. So give generously whenever we can, and receive what we need with grace. Return that #kindness in ways that only you can give to the world.” #BeKind #ChronicPain #ChronicallyIll #support Share on X

Get a Carer if You Can

If you can afford it, hiring a carer is worth it. Having someone there in case of emergencies can be reassuring. They can help to save you effort and energy, so you can focus more on what matters most – your health and studies.

On bad days, my helper even helps me to dress, as I can’t fasten my bra straps, or tie my shoelaces. As I focus on physiotherapy and regaining my strength, her help has been invaluable. It also frees my parents (or other family members) of some time, as she can accompany me to school instead. Waiting around as I attend classes or go for medical appointments is time-consuming.

Get in Touch with Your School Accessibility Office

I can’t emphasise this enough. Please don’t be shy or think that you don’t qualify as ‘disabled’ to warrant assistance. If you live with anything chronic in nature that impacts your life, that’s reason enough to approach them. You may also think, “I’ve been dealing with school fine all these years so I don’t need the help”. But if you can improve your quality of school life – why the heck not?

I am fortunate that the people who work at the accessibility office in my school, NTU, are all so helpful and sincere. They truly care about my time in school, and want me to enjoy my studies as much as possible.

What the School’s Accessibility Office Can Do for You

The school’s accessibility office will probably have a lot of good suggestions for you, based on experiences from other disabled and chronically ill students in the past. They know the best routes to take on a rainy day, or because of your medical condition. They can connect you to the right people in your faculty, and ensure that you get the accommodations you need. They can also help find you student mentors whom you can approach for ‘ground level’ advice.

My school now has a special transport arrangement for disabled students, which is great. The van picks me up from one class to another, on days when I have them back-to-back and need to get to another location.

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Woman with frizzy hair holding a pop up bubble with text: Should I approach the school’s accessibility office for help?

Tip #3: Advocate for Yourself and Your Needs

Don’t be afraid to communicate, speak up and ask for what you need. Remember, you’re not asking for the moon, and this isn’t even going to be a thing in 10 years, or even right now. Whatever your request is, it’s probably something that you truly need and not some fancy indulgence.

Our needs with disability and chronic illness also vary widely. As they say, ‘one man’s poison is another man’s cure’. So focus on your own remedy, so to speak. Take the help you need to get through school, which will ultimately help you to cope with the stress – that big, bad, evil pain flare trigger.

This can come in many forms. I was amazed by all the useful resources the accessibility office shared with me; They have tools that help students to enlarge the text on the board, volunteer student note-takers and other services and tools that help to make learning a pleasure.

Connect with Your Professors & Tutors

All my professors and the school admin staff have been very supportive as well, so I’m very grateful. They even held a one-on-one meeting with me just to ensure that I had everything I needed. As a result, I have extra time to complete my exams, added rest time if needed, my questions answered and my mind reassured. One of my lecturers also records his lectures, and I’m allowed to watch them from home on days when I’m feeling unwell.

You will need a doctor’s letter for these accommodation requests, so do write up a list of things you think might help you, and approach your doctor for help. Accepting the help you need is way more productive than trying to be ‘independent’ and showing everyone that you can handle it alone. Sure, we all probably can. But what for and at what cost? Is the price worth it?

“Accepting the help you need is way more #productive than trying to be ‘#independent’ & showing everyone that you can handle it alone. Sure, we all probably can. But what for and at what cost? Is the price worth it?” #DisabilityTwitter Share on X

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How to Advocate for Your Needs as a Student with Chronic Illness or Disability [Background: Palms supporting a heart together]

Tip #4: Get the Right Equipment for School

The accessibility office highly recommended a motorised scooter. They said that it was one of the best things other students with chronic illness and disability got for school. But it’s over my budget, and my walking is slowly improving, so I decided to stick to what I have for now.

I did buy myself a lighter laptop to bring along for all my classes. It’s kind of funny as I asked during the accessibility meetup if I could take notes on my computer, instead of using a pen and notebook. They seemed amused; I guess it’s a generational gap 😜 I am still pretty amazed that students can now use laptops in class. During my era (ahem), that might have been considered a distraction or cheating. Heck, we weren’t even allowed to bring our mobile phones to school! I’m obviously old, or older.

Oh yes, it has amazing battery life too, which saves me the trouble of hauling the charger along to school. As any chronically ill person knows, any and all things add up, so even something as ‘dismissable’ as a bit of extra weight does matter.

Tip #5: Rest & Rejuvenate Wherever and Whenever You Can

This may be on your commute to school, in between classes or anywhere else. A short nap, or simply closing your eyes for a while can help to relax and recharge you. I also try to squeeze in some time to read every day, and chat with online friends who also live with chronic illnesses. Do things that take your mind off school-related stuff. This actually helps your brain to reset. You will find that you’ll solve problems and digest information much better after.

Remember, every little bit counts, and they all add up. As a person with chronic illness and disability, I have no choice but to take it one day at a time. Even the best planners amongst us have their plans dashed way too often.

Taking It One Day at a Time

The unpredictability of chronic illness is not something that the average healthy person is able to comprehend. So don’t try to make them understand. I have friends who are perplexed at how I live my life, and how I don’t seem to have a life plan.

To be honest, I’d much rather be married with three kids in tow by now. Going to work and picking the kids up from school every day, and doing normal family things on the weekends. A most normal and maybe even ‘boring’ life.

That, or hitch-hiking and backpacking my way across the globe. Two extremes I know, but both only possible with good health. Instead, I live day to day, as I must, and make decisions as I go along. And I’ve learned to be okay with that.

Taking it one day at a time has actually been my best life strategy so far. It helps to break things up into sizable chunks that I can chew on and finish up bit by bit. It also adds some colour back into my life; My path ahead may not be as clear as others, but it certainly is more intriguing, in a warped sense. So take it one day at a time, or even one second at a time. That’s really all we can do with chronic pain, isn’t it?

Tip #6: Know When to Stop

My biggest fear is brain fog, and especially if it occurs during an exam where there’s a timer. I think I even fear chronic fatigue and brain fog worse than pain itself. When it’s ‘just’ pain, I have tools and strategies in place to help me cope. But when it comes to cognitive issues, it is beyond my control and there is absolutely nothing I can do about it. The worst part about it is knowing you have the answers there – just out of reach beneath the haze.

“When it’s ‘just’ pain, I have tools & strategies in place to help me cope. The worst part about #BrainFog is knowing you have the answers there - just out of reach beneath the haze.” #ChronicPain #ChronicIllness #MentalHealth #spoonie Share on X

Whilst I do have extra time to complete my exams, it still is a struggle. I also take more time to revise, as my brain takes forever to absorb a simple statement. When the brain fog is especially bad, I would suggest that you not push through if that’s an option. Rest, sleep, eat or go do some other mindless task that needs to be done without the guilt. I promise you’ll be amazed by what you can do after.

Tip #7: Be Mentally Prepared to be Disappointed or Frustrated in Some Ways

For example, I’m forced to take a compulsory ‘health and wellness’ module. Topics include ‘boundaries in your first relationship’, ‘mindfulness exercises’, etc. It feels a little weird as I’m the same age as the tutor, and old enough to have three kids or more by now. First relationship??? That was so long ago that I don’t even fully remember anymore!

We’re also learning about the causes of chronic diseases now, which feels strange to me as everything is so basic and irrelevant. Even painful, because I feel like what’s being taught isn’t the whole picture at all. But it seems like I couldn’t worm my way out of the module, as it’s a requirement by the university that all students must take. I tried. So I just grin and bear it, and get over and done with it.

Why are My Grades Not Up to My Standard?

To be frank, I’ve been pretty shocked and disappointed with my grades so far. I barely scraped through some of the modules. I mean, chronic pain and fatigue don’t help for sure. But I like what I’m studying and thought I was good at it, that’s why I even came back to school as an adult in the first place!

What I’ve come to realise is that the school probably expects answers in a certain format, at least for the first year. Hopefully there will be more allowance for opinions, thoughts and external research as we go along. I would have ‘fought the system’ 20 years ago. But now I know better and just go with the flow. There is a time and place to do what I need to do.

Also, if your grades aren’t great due to ill health, don’t beat yourself up over it. It is not your fault, and you’re trying the best you can. That’s more than what a lot of people give, and all that can be asked of you. Just keep your eye on the prize and try to get your degree (or whatever certification you’re studying for).

Tip #8: Connect with Your Classmates & School Mates

The Generation Age Gap

As an adult, there will be a clear generational age gap. Ways of thinking, texting, communicating and whatnot can be shocking. But I think that’s a good thing. I believe that it’s important to immerse myself and keep abreast with what’s going on around me at present. Otherwise, I run the risk of degeneration and obsoletion as I’m trapped in my opaque glass bubble.

What I Like & Dislike About The Students

What I like about students of this generation is that they seem more educated and aware of disabilities and chronic illnesses. Nobody cares that I have a walking stick in school. It’s the old folks on the streets who stalk me, and ask intrusive questions usually for their own satisfaction.

What I have been disappointed with is that when I do ask for a small favour, not many are actually willing to help. That might just be a human nature thing, though. I feel disappointed because if a random classmate had asked for that same favour, I would have agreed readily. All I asked for was some help to record a lecture with the lecturer’s permission, as I was at a doctor’s appointment.

I’ve learned a vital lesson from that experience(s) – as a person with chronic illness and disability, you ultimately still need to rely on your own devices. Advocate for yourself and ask for help, yes, but also be ready to handle it on your own if it comes down to that.

Keep Looking for Your People

Having said that, there are definitely nice people around. I just need to find them, or deepen the friendships I have first. This takes a lot more effort with chronic illness and disability in the mix, but human relationships are an important aspect of life.

Whilst I may be rejected continuously, I don’t mind. My body has been rejecting me for decades after all so I’m used to it 😜 But showing love and affection is one of my core strengths. I thrive on it, too. In fact, I think I’ve scared many boys and also potential friends away because I can be too enthusiastic to ‘love’. My Chinese name is 嘉爱 after all, which means ‘good/perfect love’. Perhaps names do have meaning after all 😉

Conclusion

So there we go. My seven best tips for going back to school as an adult with a disability or chronic illness, based on my experiences so far! As it’s a degree programme, I still have about four years to go, which is a pretty big life commitment. I’ll be 40 by then *gasp* So keep a lookout for more school-related posts!

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Anne
November 1, 2022 20:02

Hi Sheryl, I’ve found this article really informative. I’m not going back into education but my daughter will be hopefully going back in September and she will need lots of help with her chronic illness and disabilities. It’s good to know it can be done though and I really hope she gets the help she needs. Well done on taking this step yourself. I was an adult learner myself but that was before I became ill.

Erin Butts
October 20, 2022 07:04

Hi Sheryl,
I hardly know what to say because this blog was so good. I could relate to the brain fog, although mine is due to PMS. I loved your insight and perspective on going to back to school as an adult with chronic illnesses and disability. Every tip was valuable. Thank you so much for sharing!

Katie Clark
October 12, 2022 21:37

Wow, Sheryl! I’m so happy for you. You are one amazing woman! I’m glad to hear they have a assistance and accommodations for you. I know you’ll do well with whatever you put your mind, too. You’ve gone through hell but continue to reinvent yourself. 💜💜💜

Despite Pain
October 10, 2022 00:06

Well done for having the courage to do this. From personal experience, it’s easier to stay in your own bubble and much harder to step outside your comfort zone. I really hope it goes well. You have given some fabulous tips.
I laughed at this..
“I am still pretty amazed that students can now use laptops in class. During my era (ahem), that might have been considered a distraction or cheating. Heck, we weren’t even allowed to bring our mobile phones to school!” I feel really old because we didn’t even have mobile phones when I was young.

Lisa Ehrman
October 9, 2022 00:38

These are all great ideas and things to consider when starting college with disabilities. I was trying to finish my master’s degree online when I got sick. I found the only way I could pace myself was to take one class each semester. I worked on my classwork while I was in bed. It worked for me. I wish you all the best in your studies!

Carrie Kellenberger
October 6, 2022 17:44

Hi Sheryl aka the lovely Jiā ài. Did I read it correctly? My reading in Chinese is intermediate and it’s a mix of simplified from my time in China and traditional because of Taiwan. I know you’d laugh if you knew my Chinese name. 🙂

So, I loved this article! I have loads of thoughts and comments, but will try to keep it brief. First of all, what a fantastic resource for students! Well done. You’ve hit every point and then some. Thrilled to hear the accessibility office at your school as well as faculty have been so supportive. Surprised by your comment and asking for a simple favor and not recieving it. Loved your point about how you’re pacing for all of this. Hate that you have two houra of commuting every day! PROUD to call you my friend and look forward to supporting you as much as I can through the next four years!