I believe that self-care is an important component of all-around wellness when you have a chronic illness. Many of us do what we need to get through each and every day, just so we can survive. It’s often difficult to prioritize ourselves and our health when there are so many other demands on our time and on our bodies. If you have a spouse, children, or other family members in your household, your needs often get sent to the bottom of the list, which can further damage your health. However, you can’t help anyone else if you can’t help yourself. It’s easy to say “Prioritize yourself so that you can improve your health,” but how do we do it? How do we practice self-care?

1. Recognizing and monitoring the boundaries

Setting boundaries is an integral part of living with a chronic illness and practicing self-care. You will never be able to prioritize yourself if you don’t set clear boundaries. Make it clear to your friends and family what you can and can’t do, and then don’t cave if you get pressured to break those boundaries. This is the hardest one for me, because I am at heart a people-pleaser and don’t like to say no. It took me years to learn this lesson, and only because I over-committed myself too many times and it took a significant toll on my health. Now my rule is that if I don’t think I can do something, I politely say no, without explanation. It’s not my job to justify my actions. I should have as much compassion for myself as I do others.

2. Changing your view of yourself

Having a chronic illness often comes with a lot of feelings of inadequacy, which can affect our ability to prioritize self-care. One day you’re a healthy functioning member of society, and then suddenly you can’t do everything you used to do. You may have had to quit your job, dropped your social life, and you can barely cook for yourself, much less maintain anything else in your household. Your friends are making great achievements, while your greatest achievement is taking a shower. Suddenly you may feel worthless. In order to survive, you have to change how you view yourself. You can’t base your self-worth on your career or your athletic prowess. You need to find a way to value yourself for the person you are, instead of valuing the things you do.

3. Self-medication — or connecting with yourself

When you have a chronic illness, you may sometimes be good at taking care of yourself on the outside by going to the right doctors, taking the right medicines, and eating the right things. However, it can be harder to take care of yourself on the inside. You may convince yourself you’re fine with your illness, while wondering if there’s any point to living like this long-term. You may tell people you are valuable, while wondering if anything you do will ever be good enough. You might say you don’t feel guilty, but inside you are constantly stressed about all the things you should be doing better. You may hide the pain and pretend it’s not there, but all the while it eats at you. Try to connect with yourself instead of hiding your feelings. Look at different ways to take care of your mind. My new favorite way to practice self-care is adult coloring books.

4. Pacing, planning, and prioritizing

When you have a chronic illness, all too often you wake up one morning feeling good and decide to catch up on all the things you’ve fallen behind on. This can result in burn out, which means that your next few days are going to be bad days, and you’ll fall behind again. This cycle is damaging to both body and mind, and can often be avoided with a little practice of self-care. Pacing involves setting reasonable goals for yourself and not heavily basing your activity on your pain level. Find your baseline for each activity and stick to it. If you can only walk for five minutes before you hit your threshold, only do it for five minutes. Honor your body. Don’t push through activities just to please other people. Prioritize yourself and your health.

There are many other components of self-care with chronic illness that are not within the scope of this article. What’s important is that you prioritize self-care. Self-care might even look different to you than it does to other people. Find what makes you feel better — that’s all that matters!

Follow this journey on Chronic Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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“It would be nice to get better by the end of the year.” This is a thought that resurfaces within my mind quite a fair bit. While others may be making resolutions for the new year, those who are chronically ill can be bound to unpredictability and usually make plans on a daily basis instead.

“What can I do to get there?” Then it struck me that to get better this year meant getting better today.

Perhaps that little thing you did for yourself today — be it 10 minutes of light exercise, improving one aspect of your diet, getting an extra spot of shut eye, or just sitting down to regulate your thoughts — feels as if it made no overall impact.

I know how that feels because I often become frustrated, thinking that my present action is too insignificant to even cause a dent in the colossal problem before me. Or I get a little impatient, wondering what I have to do next, not now. I want to see immediate results, which doesn’t make any sense because everything takes time to manifest.

So this is a gentle reminder to be patient with myself — and that things done for the good of your own well-being never go to waste, whether it is a big, small or unseen contribution. Keep getting better today, my friend!

And because I think quotes are great little reminders when placed somewhere within sight, I’ve created a few visual quote cards. Feel free to click on the quotes below to download or print them out for your own use!

Follow this journey on A Chronic Voice.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Dear Friend,

I just need you to know a few things. First of all, it means the world to me that you ask me to hang out. Second, I feel awful when I tell you I can’t. We aren’t that close, or maybe we are, but I’m pretty private about what’s going on with my body because I don’t want to be annoying by constantly talking about my illness. This means you may know some things about what’s wrong with me, you may or may not know my diagnosis, but either way, when I tell you I can’t hang out, it’s usually accompanied by a lie. It’s usually harmless (at least I think it is); it’s usually something along the lines of “I have too much homework” or “I’m going to see my parents.” Maybe you know that I’m lying, I don’t really know, but most of what I’m saying translates to “I do not have the energy to do anything today” or “I’ve worked all week and I have no homework but I really just want to spend the weekend doing absolutely nothing so I’m ready for next week.”

I wish I could make you understand why things like going shopping or even just going to
lunch are so hard. Sometimes you know that these things make me tired, so you offer to just hang out at your or my place, watching movies or baking. But those days are hard, too. They’re fun, they really are, and I thoroughly enjoy our time together. But being out of my house is exhausting; simply existing is tiring for me. Standing and walking is exhausting, and interacting with people (yes, even friends I’ve known for a long time) can be exhausting. You know those days that we spend shopping? I often go home and sleep the rest of the day, and spend the next day resting to make sure my body is OK. I don’t know why it’s so hard to do these things; I wish it wasn’t. I wish I could do the fun things we
used to do.

The best explanation I can give you is that my body doesn’t work right, and literally everything I do takes more energy than it does for most people. I could go into details, but I don’t know if that’d help much. (Example: Standing, moving, talking, eating or anything that involves movement is tiring because I have to consciously hold my joints in place, and that’s tiring for my body and mind because I have to constantly be thinking about what I’m doing). I just want to apologize for lying to you, and to tell you this: Please don’t stop asking me.

Please don’t think I say no because I’m too busy or don’t like you. Eventually I will say yes, or I will even ask you to go out with me. I’m sorry it’s always on my time. Well, it’s not my time; it’s my illness’s time. It decides everything for me now, and trust me, I hate it and wish this wasn’t the case, but right now there’s nothing I can do. Please believe me when I say that. I’ve done everything my doctors and I know to do, and I really miss the way my life used to be before this sickness took it over.

Sincerely,

Your secretly chronically ill friend

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I have basically been in pain my whole life. My body has been fighting me for as long as I can remember. And I have been fighting back.

I have days when I can’t get out of bed and days when my husband has to help me to the bathroom and back, but I always get up again.

I am one of the lucky ones. I have an incredibly supportive husband of 42 years, two grown children, a son-in-law and three grandchildren who look after me and support me through everything. I am also blessed with friends who never let me down, even though there are many times when I let them down. Many people in my position have no emotional or physical support at all.

My secret weapon is my online support group. We are a small group of people suffering under the same umbrella of diseases. We share our lives online. I feel closer to some of these people, whom I have never met, than some of the people who are in my life every day. Without this group of women (and one very brave man), I think I could sink into a terrible depression.

You see, I have what is referred to as an invisible disability. If you see me on the street, and it’s a day where I don’t need my cane, or my walker or even a wheelchair, you wouldn’t know that I am disabled. That can be a blessing and a curse all at the same time. For some reason, it seems to be very hard for people to understand something they can’t see.

If you see me at the movies with my grandchildren, or out shopping with a girlfriend, or even working in my vegetable garden, what you don’t know is I am making a choice to keep on living. I will pay the high price of increased pain and fatigue for doing these things, but I will do them until I can’t do them anymore.

More than 10 years ago, on a dark evening, I was standing beside my husband’s truck in a parking lot and I was crying. An elderly lady came up to me and asked me if I needed help. I told her I couldn’t get myself back in the truck to go home. Her husband then came over and the two of them helped me into the truck. She told me they were shocked and had no idea someone who looked like me could be in so much physical pain.

Social media these days can be rampant with stories of people who are faking it, and it can also be full of stories of people who need and deserve help, but have been judged unfairly. If I run into you in town, or you see my smiling face on Facebook, doing something fun with my family or friends, and you really want to know, then ask me. I will be happy to explain my situation. If you really listen, I think it will help you be more understanding of people with invisible disabilities. We don’t want to be treated differently, we just want to be treated fairly, and we want people to stop judging us.

If you want to hold the door open for me, or offer me your seat when you see how exhausted I look, I will be grateful. If you can try to be a little more patient at the counter, when I am struggling with my fingers and I can’t get my money out to pay for my shopping, I will be very grateful.

There are many little things you can do to make other people’s lives easier — things that won’t cost you any effort at all, but will make a huge difference to people like us, and, in the long run, can make you feel better about yourself. To me, that’s a win-win situation.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


What does the term “chronic illness” really mean? What is the difference between a chronic and terminal illness? I often feel the term in itself is not quite understood.

Simply put, it is a permanent illness that might not kill you in the foreseeable future, but is something you will have to live with for the rest of your life. Like having the flu until the day you die. There is no cure at present; all you can do is try controlling the symptoms with an experimental cocktail of treatments.

Although many chronic patients manage to live their lives out thanks to advances in medicine, a large percentage do not survive, either. In fact, according to the World Health Organization, chronic diseases are the leading cause of death in the world at 60 percent of all deaths.

Mind you, I am not diminishing the severity of other causes of death, but I am asking why is the leading cause of death in the world not given the attention it needs? Do we simply get used to the idea, because many chronic patients do not look sick enough or die fast enough to trigger an empathetic response?

What it means to live with a chronic illness is that the hospital becomes your second home, no matter where you are in the world. It means doctor appointments will be a definite part of your schedule, indefinitely. You learn to bring your own pillow for long-haul hospital stays.

Clinical tests become part of the normal routine — having an X-ray taken starts to feel no different from a snap on your camera phone. Having blood drawn from your veins becomes just another task to strike off the list, like getting your groceries done.

There is no such thing as “private” parts. You get used to being examined by doctors and nurses. You learn how to suck it up and make it hurt less.

What it means to have a chronic illness is that it’s part of your DNA, and while modifications to your diet, lifestyle or environment can make a difference with the maintenance of the disease, they will never eradicate what’s part of you.

Sometimes the only thing medications can try putting out are the symptoms. Extinguishing that fire might stop the whole house from burning down, but that does not mean it leaves no damage of its own to an already broken home.

It means many of us don’t have money set aside for rainy days, because rainy weather is the year-round climate in our world. Even if it isn’t a raging thunderstorm, there is always a light drizzle now and then.

To live with a chronic illness often means the pain is confined to the inside of your body. It starts to fester under the skin where nobody can see, and by the time it does rise up to touch your physical features such that you qualify as “looking sick,” it has often climaxed to a life-threatening situation.

While it is possible to go into remission — downtime when the illness is well-behaved — it does not mean you have been cured or these mutated cells are dead. They are just taking a nap, and the longer they do so, the better.

Follow this journey on A Chronic Voice.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I care a lot about the way I look.

While I don’t spend hours applying makeup in front of the mirror, I do ensure I look somewhat presentable before stepping out of the house. This can be a struggle on bad days, but still I try. Why?

I have spent a lot of time in hospitals, sharing my personal space with others. Once, I saw an old woman being nasty to everyone around her. It struck me that I was becoming just like her; I didn’t recognize myself anymore, even detested it.

How had I arrived at that state? I had been struggling for an extended period of time by then, and I had become sick of being sick. I was frustrated by the unpredictability and, worst of all, the lack of hope for better days on the horizon.

That bitter core we tapped into didn’t happen overnight. It is a gradual process, the kind that happens in dribs and drabs so you never feel the harshness of a direct blow. It begins with the thought, “Just for today,” which ends up becoming a regular affair. The first layer is the physical one — our appearances and how we present ourselves to the world.

When that layer peels away for whatever reason — pain, exhaustion, grief — beneath it lies the more vital layers of emotional and psychological well-being. When we allow these layers to be defiled by whatever it was that tore the top off, we begin that slow journey of degenerating into an inhuman version of ourselves.

When we arrive at that state, we may no longer care if we are nasty towards others, appear ungrateful or crude. Often that behavior may be a reflection of how we feel on the inside. So if you meet someone unpleasant, it might just be that they are going through a difficult time.

Our physical appearances are visible, unlike the unseen problems festering beneath the skin. It is one thing we can improve, a mental exercise that can be tougher than it looks at times.

Perhaps you might say the first physical layer is a superficial one, and of course, I let it slip now and then when the pain is too much to bear. But I have also learned the longer I can fight to keep that layer on, the slower I unravel into that bitter core.

So that is why I try.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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