Hi, I’m Kate, and I’m a disabled millennial. I have a gazillion chronic illnesses (8 to be exact). I’ve been in pain since 2001. I have a lot of fatigue because, again, 8 illnesses. And I know how difficult independently living with a chronic illness can be.
In this post, I’m going to cover what specifically has been difficult for me when living independently, strategies I use (and are helpful) now, and things I don’t do that could help you. Whether you’re looking to be independent or you already are and want tips, this post will help.
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If you didn’t read my blog before 2014, you may be wondering why living independently is such a big deal to me. Well, in 2013-2014, I taught high school and lived independently in Nashville.
Teaching is not a low-impact job. I was essentially working 60+ hours a week, and approximately 40 of that was teaching in school, and most of that was on my feet. I barely had a handle on my health, and I so enjoyed being able to focus on the parts of my life that weren’t my health that I didn’t take enough care of myself.
I basically worked myself to the bone, and with very little support at my job, my mental health was really suffering, too. I’ve had generalized anxiety disorder for a long time, but this is the worst it ever was. For example, I had multiple panic attacks a week. So mentally, I was having a really, really hard time.
Before the new school year started, I quit and moved home to Boston. Over the course of many years, I got my mental health under control and my physical health was somewhat under control, but I knew it would never be like I tried for it to be in 2013.
After moving home to New England, I lived with my parents for over 7 years. In that time I went to grad school, worked to pay off my student loans, and got my physical health to a point where I could manage it. I finally got to a point where I could handle it all, and I moved out in October 2021.
Now that I’ve talked about my experience living independently but overdoing it and living with my parents and managing it, I want to talk about what specifically was difficult when I lived independently.
Feeding myself – I wasn’t as intentional with my activity as I am now, which included cooking. I cooked most days, and when I didn’t cook, I didn’t eat as well as I could have. I ate a fair amount of fruit and vegetables – I had to, since there weren’t as many options that were free of gluten and dairy as there are now – but I was just as likely to eat only roasted broccoli for dinner as I was to eat only carbs.
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Keeping the apartment clean – While I was okay at keeping things tidy, I wasn’t as good at keeping it clean. And my anxiety gets a lot worse if things are messy, which is hard because, as I’ve finally accepted, I am inherently a messy person. (It’s why I like organization so much!) If I’m living in a messy space, I’m more likely to have an anxiety attack.
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My mental health – Similarly, I wasn’t good at managing my mental health. I only dealt with it when it became a problem, which is not when you should be managing it. You need to work on it before it’s a problem. To be fair, despite having symptoms of it for most of my life, I wasn’t officially diagnosed with generalized anxiety disorder until spring of 2014, but I still could have been better. Which is why I went back to therapy in spring of 2014.
I had been in therapy briefly in high school and again briefly in college, but I didn’t go back to therapy until near the end of my year living independently. Even then, I didn’t have a good therapist for me; it was someone who I always felt the need to comfort when I told her about ridiculous things about my health. (And given how ridiculous things have gotten since then, I barely brushed the surface when I saw her.) That’s not a good therapist, or at least not a good one for me.
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Managing life and health – As a whole, I wasn’t good at managing both of these. Most of the time, that’s okay. I was 22! What 22 year old is good at managing their life and health? But when you have a raging autoimmune disease, not being good at managing them is a major issue.
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Now that we’ve talked about my experience and the things I wasn’t good at, let’s look at my tips for making independent living with a chronic illness easier. Some of these are based on what I struggled with, some are things that I thought about when I went to move out to be ahead of potential problems, and some are things that I don’t do but might do if I needed some extra support.
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Order your groceries – This was not available in 2013-2014 – or, at least, I didn’t know about it – but it is essential to my life now. Walking around a grocery store, no matter how much prep I do, is very painful for me. And that doesn’t take into consideration carrying things or putting them away when I get home, or the COVID-19 exposure risk that exists now.
So I order my groceries online and just have to carry them inside from my front door. It is an absolute game changer.
There are a lot of different places where you can order your groceries, and the costs can vary a lot. It’s also important to me that I tip the delivery drivers/shoppers, and I count that all as part of my grocery budget.
I primarily order my groceries through Stop & Shop because the prices are good, they sell 12-packs of seltzer water, and they have a lot of things that I can eat.
Amazon Fresh has good food at okay prices, and Whole Foods has really good food and 12-packs of seltzer. Wegmans has really good food at okay prices, but if I buy from there I have to go through Instacart, which has a lot of fees.
Grocery shopping online is not without fees, but to me, the fees are what I pay for being able to skip in-person grocery shopping, which really means being able to have less pain.
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Buy pre-chopped food/ingredients – Every couple of years, some picture of chopped up fruit in plastic will go around the Internet with someone snidely commenting “If only this fruit came with its own packaging .. wait, it does”. Disabled advocates will point out that sometimes people need pre-cut food for health reasons, but most people tend to just focus on how “useless” and “wasteful” pre-cut food is.
But if you have severe rheumatoid arthritis, especially in your wrists and hands, chopping is painful if not extremely difficult. Just like paying for grocery delivery is paying to skip in-person shopping, buying pre-chopped food is paying for less pain and/or being able to eat food I can’t cut up on my own.
If you want to make a meal with diced onion, minced garlic, sweet potatoes, and sausages, you can get 3 of those 4 already cut up for you, and if you plan on cooking the sausages as they come, you don’t have to do any prep that involves cutting. That’s a lot of standing and cutting gone.
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Stock your freezer with food that doesn’t require cooking (or requires minimal cooking) – The idea behind this is pretty self-explanatory: no matter how bad a pain day you’re having, you need to eat something, and if you’re like me, a “bad day” is really a multi-day affair. In my case, for every bad pain I have, it takes two to recover. So even if it’s just one bad day, it’s still a few more days until I’m back to where I was.
And I still need to eat on those days.
Of course you can order food, and there are some days where I order food because I can’t even cook pre-cooked sausages on the stove. But that isn’t cheap, and it gets expensive really fast, so unless I can’t stand for 10 minutes, I make my own food.
Unless you have food intolerances, stocking your freezer with pre-made or easy-to-make meals is super easy to do. Even if you do have food intolerances, there are plenty of options if you’re gluten-free, dairy-free, gluten-and-dairy-free, vegan, or vegetarian. However, if you’re like me, your list of no-go foods is significantly longer. In that case, I suggest taking a day or weekend to make a bunch of dump meals.
Dump meals are when you gather all the ingredients you need for a particular meal, cut up all the ingredients, put them all in a container, and put them in the freezer. Then, when you’re ready to make the meal, you defrost it and dump it in the crock pot to make.
Meal prep – Similarly, it’s a good idea to meal prep. Meal prep, if you’re unfamiliar, is pretty similar to dump meals in that you do all the prep ahead of time. But instead of making maybe months of meals at a time and putting them in the freezer, you make a week’s worth.
The idea behind this is not just eating one meal’s leftovers. It’s making dinners for multiple days, lunches for multiple days, maybe even snacks for multiple days. The point is to make them on the weekend so then you don’t have to cook during the week.
Whether or not this is a strategy for you really depends on the person and their chronic illness. What works for me is making a big dinner on Sunday, Monday, or Tuesday – even if I worked an 8-hour work day – and then having the leftovers in the following days. But making multiple big dinners in a single day is not an option for me, even if I don’t do anything else on that single day, so meal prep isn’t for me.
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Buy accessible cooking tools – There are so many products out there that can make your life easier if you just know what to get. Especially when it comes to cooking. Due to my arthritis, I sometimes have trouble gripping and holding on to things,
I love the brand OXO because all of their products are designed to be easy-to-use. You might think that’s a given, but it’s not, and it’s intentional at OXO. Their website says, “At OXO, we look at everyday objects and activities and we see ways to make things simpler, easier, more thoughtfully designed–better” (x).
And it doesn’t have to be explicitly made to be an accessibility product! I think most of the things I use aren’t made for accessibility reasons, although I use them like they are. The point is that they make cooking easier and easier on the joints, which makes cooking easier and less painful.
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Work remotely if possible – Not commuting has been absolutely incredible for my health. For one thing, my pain is a lot better because I’m not standing and walking a bunch twice a day. For another thing, because I don’t commute or work in an office any more and I always wear a mask when I leave the house, I don’t get sick as frequently. As someone with a suppressed immune system, that is absolutely incredible, even not considering the pandemic.
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Split housekeeping tasks with people you live with – Obviously many people already do this. But when you live with chronic illness, it’s much more important to be intentional with it.
Before I moved into my apartment, I told my roommate that I generally wouldn’t be able to vacuum. I could (and do) sometimes, but it’s a chore that I really can’t proactively sign up for.
I dust and clean the bathroom. My roommate vacuums. We each deal with our own rooms and the kitchen, which we (obviously) equally use. If I make a mess that requires vacuuming, I vacuum. The only time I can see that changing is if I’m unable to stand or walk and I spill something.
Establishing this from the beginning means that there isn’t resentment between us because one feels the other is doing all the work. It also means that the apartment is regularly cleaned, which is good for, you know, life, as well as anxiety if you’re someone like me who gets more anxious the more mess there is.
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Set reminders on your phone to do these tasks – If you live with brain fog or you’re neurodivergent, it might be difficult to remember to do these housekeeping things. And if you’re like me, having a clean space is necessary for your mental health.
Help deal with both of these by setting reminders on your phone!
I have a recurring reminder on my phone to remember to clean the bathroom. When I know that I need to clean my room or vacuum or clean before going somewhere, I set a singular reminder for that particular task.
Plus, I break it down into individual tasks, instead of just “clean room.” I’ll set a reminder for vacuuming my bedroom at 12 PM, a reminder to clean the bathroom at 2 PM, a reminder to empty the refrigerator at 3 PM, and a reminder to take out the trash at 4 PM. I spread it out so that I do every individual task that’s necessary, but also so I can take breaks in between.
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Get a robot vacuum – Yes, these can be expensive, but think of how much pain and energy you’ll be saving by getting one and not having to vacuum. (I definitely want one.)
These don’t do everything. My parents got one after we got a golden retriever, who sheds a ton year-round. He sheds so much and his hair is so much lighter than the floor that you can see all of it. By having a Roomba, my parents don’t have to vacuum every couple of days. But they do like to use a proper vacuum every few weeks because the Roomba can’t be as precise as a regular vacuum.
But as I’ve mentioned, mess stresses me out, so having a robot vacuum can make a huge difference in my mental health. It can keep things clean and doesn’t require work other than setting things off the ground so it can work and emptying the vacuum.
Pay for professional cleaning every now and then – If you can only do some cleaning and you can afford it, I highly suggest paying for professional cleaning every now and then. This way, you can rest easy knowing that professionals are doing the work but not break the bank.
What “every now and then” means depends on you, how your illness affects you, and your budget. Maybe you pay for it quarterly and do your best in between. Maybe you treat yourself to it once a year. Maybe you get it done once a month because you’re really not able to bend and walk around, the two tasks that basically all cleaning comes down to. Maybe you only have it done when you’re recovering from surgery and are fully unable to do any cleaning.
Regardless of when you do this, it can be really helpful to pay a professional to do deep cleaning that you can’t do or can’t do without paying for it physically.
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See a therapist – First of all, I think anyone who is able to afford it should see a therapist. Second of all, if you have a diagnosed mental illness like generalized anxiety disorder or depression and you are able to afford it, you should probably be seeing a therapist, if only every now and then for a check-up.
Now that we’ve covered that …
One thing that has made living independently easier is all the work I’ve done with my therapist. I’ve been seeing him for years and years, and as I got closer to moving out, we started working more and more on my feelings about living independently. We talked about what made me anxious about living independently. We talked through different potential problems I could face when living independently.
Then, when I did move out, we started talking about what I was experiencing, how it compared to what I expected, etc. It was extremely helpful!
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Find a mental health routine that works for you – I think everyone should be cognizant of their mental health and consciously work on it. Like physical health, we all have mental health. You still have physical health even if you don’t have any health problems or any health history other than routine doctor’s appointments. Likewise, you still have mental health even if you don’t have a mental illness.
Therapy is one part of my mental health routine. There are a bunch of other things I do to manage my mental health, and I suggest you find what works for you and your mental health.
I don’t know your brain, so I can’t tell you what to do, but if you’re looking for ideas, here are some things I do:
I don’t let myself do any work in the first 30 minutes after I wake up, and that definitely includes blogging work. The first 30 minutes is about easing into the day.
I have what I call a “wonderful moments jar”. At the end of every day, I write down one wonderful moment of that day. I write it on a post-it note, and I have a clear glass jar that these all go in. This helps me by consciously thinking about what good thing(s) happened in my day. And when I look at the jar, I see all the post-its and know that they are all good things. When I have really bad days, I can read through the notes and remember the good things.
I take a 30-minute lunch break away from my desk every day. While I definitely use some of that time to look through social media on my phone, I also make sure to spend some time reading a physical book and putting my phone away. Even 5 minutes of less screen time helps me!
Whenever you guys leave a really nice comment on a blog or Instagram post or send me a lovely DM, I screenshot it and save it in a folder on my phone called “Nice Things”. When I have self-doubt or low moments, I read through the posts in there and see all the nice things people have said about me and my work.
These are just 4 small-ish things I do, but they are all so helpful. Taking care of your mental health doesn’t have to be journaling or affirmations or limiting your screen time. Maybe all of those things help you and maybe something completely different helps you.
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I really hope these tips help you live independently with chronic illness! I have loved being independent again, but it has not been easy, and I’m not going to pretend it has been. And at the end of the day, I can’t see the future, so I have no idea if I’ll be independent from this point forward or if that will change. But I do know that I’m doing my very best, and that’s what matters.
What are your tips for living with a chronic illness?
Like this post? Share it! Then check out:
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Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Kate, it thrilled me to read your comment about messy spaces making your anxiety worse, yet realizing you were a messy person at heart. This describes me as well!
Hi Kate, Boy did this post hit home. I too have several chronic illnesses that cause severe pain and fatigue. In addition, I am primary caregiver for my husband. I always make sure there are a few TV dinners for us if I’m having a really bad day. Usually, on a good day I make a batch meal, one to eat that night and three to freeze. We both use Boost or Ensure if I’m not up to anything. Fortunately, that doesn’t happen too often. I thank God we can now get our groceries delivered. I bought an electric potato peeler so I could make homemade mashed potatoes for my husband. Before this, I was using the frozen ones which were very expensive. I make a whole 5 pound bag and freeze them in 2 cup servings. I can no longer open jars so a jar opener is a must for me.
Housekeeping is not something I can do anymore. I do have a Roomba and love it. I use it several days a week. With 4 dogs I have to use it every day. I pay my daughter to clean weekly and as needed for me. I have a friend that I pay to do some daily things when she comes for coffee in the morning. If I’m not up to doing my husband’s morning care routine, she will do it for me. I am so fortunate and blessed. I finally found someone to mow the lawn and also do other yardwork that pops up frequently. Most people will mow the lawn and that is it.
I am medicated for depression and I’ve seen a therapist in the past. It was only moderately helpful so I did quite a bit of self help research on the internet and implemented several coping strategies. Fortunately, I have a good support system of family and 2 friends I can rely on. Before this, I lost several friends due to my illness and not being able to socialize much. Since I’m homebound, I didn’t have a lot to talk about (besides my pain and fatigue) and that got old to them. I enjoyed hearing about their lives but friendships waned because I couldn’t contribute much. I thank God for the friends I have now. I love your idea of a wonderful moments jar and will definitely be implementing something like that for myself.
I try to keep busy so I’m not watching TV or on the internet all the time. But, taking care of myself and my husband is a full time job and I get tired very easily. I love the fact that now we can do video visits with most of our doctors. My husband has so many doctors and it takes 2 of us to just get him into the car and then into the wheelchair and was quite exhausting.
Kate, I’m so happy I found your site. It gives me one of those “finally, someone who understands” moments. Thank you so much for your insight.
I think a very important thing for people with chronic illness is to get organized and keep things clean. That way they can save time to themselves, instead of spending time in tasks that can increase anxiety levels and pain.
great tips
I am so glad I found your blog. I will share it with a chronic ain group I run. One thing that helps is to pick things up and put them away once a day if you can. Clutter builds up quickly and then you have a big old mess. Clutter really bothers me.
Thank you for this blog. There are some great tips here! I’m coming off a major flare up. It was taxing physically, mentally and emotionally. These tips are things that have crossed my mind but, I haven’t given too much thought. The pre-chopped vegetables are going in our grocery list! Thank you for putting this out there.