10-Step Guide To Living Well With Chronic Illness

Step 1: Understand the emotional impact of receiving a diagnosis

For some people, a diagnosis might come out of seemingly nowhere; for others, it could be a huge victory in a years-long struggle to get medical professionals to accept and understand what is going on with their bodies. Receiving a diagnosis of chronic illness often invokes a wide range of emotional reactions. (What do you mean there’s no cure?!) There is relief from finally knowing what’s wrong, and optimism that comes along with being able to start targeted treatments…and there is fear–lots of unknowns, and thoughts about worst case scenarios. Allow yourself to connect with all of the emotions that you might be feeling while receiving a diagnosis of chronic illness. Be happy. Be scared. Be frustrated. Be overwhelmed. Most importantly, be ready to take charge of your health, and of your life.

Step 2: Familiarize yourself with the stages of grief

Life is full of ups and downs. For those of us who live with chronic illness, the peaks and valleys have a tendency to become more extreme, and the journeys between them often occur much more frequently. For many people, living with chronic illness will create feelings of mourning and loss not unlike those that are associated with the passing of a loved one, or the end of a marriage. Much has been written about the stages of grief and loss; one of the seminal books on this topic is On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss by Kubler-Ross and Kessler. Identifying with these stages is essential when it comes to living well with chronic illness, as is accepting that we do not experience them sequentially or on a one-time basis; it is much more common to repeatedly jump around from one stage to another.

Step 3: Smile a lot, and learn how to laugh at yourself

Before I talk about chuckles and smiles, let me talk a little bit about crying. Crying can either be a wonderful thing–it can leave one feeling refreshed and renewed–or it can be a not so wonderful thing–it can start feeding on itself and on feelings of depression, and create a seemingly endless cycle that is often difficult to break. Studies have proven the benefits of smiling…and even if they haven’t, isn’t this notion easy enough to prove to ourselves? Not only does it feel good to smile (even when we’re not in the happiest of moods), but it also makes others around us feel good, too. So when the tears only continue to bring you down, smile–even if you have to force yourself to–and chances are you will discover that with time, smiles will start coming along more frequently, and more naturally. And for those times when it feels like all you can do is cry in response to something that just happened (you drop and break a beautiful ceramic mug, spill juice all over a pile of freshly laundered towels, or trip and twist your already inflamed knee), try to instead find the humor in the situation, and laugh at yourself. Trust me–it works!

Step 4: Open yourself to receiving help and support, *wherever* you find it

When it comes to living with chronic illness, one of the best things that I have ever done to help myself was learn how to ask others for help. I think most of us have done the butting-our-heads-against-the-wall routine: I will *not* ask for help, no matter what; I *will* continue to do this all on my own. Many of us who have moved past this approach have, however, discovered the beauty that comes not only with helping others, but with allowing others to help us. I have also learned that quite often, some of the best sources of support often come from where we least expect them…so again, we can focus on the pain that results from thinking about how a certain person isn’t supporting us as much as we’d like, or we can look to the inspiring sources of support that continually surround us. They might not always be easy to see, and they may not always overlap with our ideas of where support is “supposed” to come from, but they are always there.

Step 5: Continually research and learn about your condition (within limits!)

A large part of being in charge of your health is researching everything about your chronic illness: symptoms, treatments, medicines, procedures, research findings, scientific advances, etc. Do so with caution, however, as there is a fine line between staying informed about your disease, and having this disease and the quest for information/answers become a primary aspect of your personal identity. Even if most of us haven’t done so ourselves (and let’s admit it, most of us have!) we all know the stories of people who stayed up until 3 a.m. doing Internet searches of their latest symptoms, only to become convinced that imminent death was a couple of hours away. Another large part of taking charge of our health is connecting with others who live with the same condition. I would once again urge caution, though…it’s great–even often completely necessary–to share our frustrations with others, to talk about the challenges we face, and to discuss how many other people “just don’t get it.” My belief is that it’s just as necessary to follow up these conversations with an “okay, this is my current situation…now, what am I going to do to improve things?” If you find yourself connecting with individuals who have a tendency to focus solely on the former and ignore the latter, you might want to consider the possibility of instead hanging out with friends who inspire you to be the best person you can be.

Step 6: Eat well

Ahhh, the third rail of living with chronic disease: diet, and it’s effect (or non-effect) on the body. I’ll keep this simple. Between the clamors of “Diet doesn’t make one iota of a difference, and we need to immediately stop discussing this topic” and “I cured my disease by drinking copious amount of pickle juice, and so can you!”, I find it hard to disagree with something that most of us were taught in elementary school: some foods make us feel better and do us good, and other foods make us feel worse and do us harm. Now, exactly which foods do what is different for each one of us, but if we do take the time to figure out which ones we should eat more of and which ones we should eat less of, chances are that we will feel stronger and healthier. (And if you live with chronic fatigue, you also just might figure out a way to boost your energy levels.)

Step 7: Don’t stop moving

When a person’s body overloads the brain with pain signals, a very natural–and intuitive–response is to stop moving. If you’ve ever done any detailed reading on the topic of pain, you know that this is exactly how pain is supposed to work: yoohoo, something’s wrong over here…can you stop and take a minute to fix the problem? What is a person supposed to do, however, when the pain is chronic? When, no matter what, the pain just doesn’t go away! I don’t mean to sound flippant here, but for me at least the answers is to find a way to keep on moving, no matter what. I’ve said it before and I’ll say it again: I’m not advocating for movement that causes serious harm of injury…but if I am going to hurt all the time, I have to accept that this is my reality, and I have to figure out which movements will allow me to keep my body flexible and mobile, which movements will allow me to recover (as much as possible) from continual damage and injuries, and which movements will nurture my mind and my soul. As many of us who live with chronic disease know, it can be quite a challenge to find the point between doing “too much” and doing “too little,” but patience, experience, willpower, and the right attitude do help us along our journeys of searching for and finding that constantly shifting point of equilibrium in each one of our bodies. (And don’t forget the old adage: even when we can’t move our bodies, we can always move our minds!)

Step 8: Never underestimate the healing power of mindfulness meditation

The other day someone asked me, what do I do when my rheumatoid arthritis is at its worst, when absolutely nothing seems to work? If I had been asked that question ten years ago, my answer would have been: I try to claw away the pain, both emotionally and physically; I get anxious and have panic attacks; I get scared and cry; I feel sorry for myself; I roll up into a ball. If I had been asked that question five years ago, my answer would have been: (continued emphasis on the word “try”) I try to breath and relax; I try to meditate and float in the pain, even though it still really scares me; I try to remind myself that in this very moment I have a decision in how I react–I can either go down the path of fear and anxiety that I know all too well, or I can search out a different route. My answer today would be: I meditate; I relax; I breathe deeply; I find peace in the storm; I learn that these coping techniques help me in *all* aspects of my life. My travels from then to now definitely weren’t easy but they have certainly enabled me to follow a path that continues to enable me even more not only when it comes to the present, but also when I think about the future. For anyone interested in learning more about mindfulness meditation and its relationship with health and medicine, I would highly recommend any of the numerous resources by Jon Kabat-Zinn. (And for anyone interested in a very detailed–yet easy to understand–explanation of pain, as well as a scientific understanding of how stress and anxiety only increases pain signals, I would highly recommend Explain Pain by Butler and Moseley.)

Step 9: Embrace change, and do what works for YOU!

Life is *all* about change. Most of us don’t have any issues with this…as long as what we are referring to is “good” change…but introduce something like chronic illness, and all of a sudden we freeze up, and want things to stay exactly as they are (or, go back to the way they used to be). The more we embrace change while living with chronic illness, the better off we are at identifying what is within our control to change and what isn’t…and the more that we focus on things that we do have the ability to change, the more quickly we will reach a point where we realize that thoughts of worst case scenarios are a thing of the past, and when we eventually learn that even though the road we traveled was completely different from the one we originally envisioned, we actually did end up in a place that is nicer than anything we could have ever previously imagined. (Imagine that!) Throughout this journey with chronic illness we will encounter many other individuals who are also living with health conditions similar to and different from our own; some will be worse off than us, and some will be better off than us; some will believe in treatment options that perfectly align with your own treatment options, and some will use treatments that we would never, ever try ourselves. What’s less important is that we all “do the same thing,” and argue over the elusive (and nonexistent) “one way/best way to do things.” What’s more important, and also a much better use of our individual and collective time and energy, is that we encourage and support each other as we move towards what we all want, which is better living with chronic illness.

Step 10: Never let go of your dreams

There will inevitably come a time when we encounter new limitations (temporary, permanent, on and off, or otherwise) with what we can do, and there will more than likely come a time when it feels like our dreams are slowly slipping away. The beautiful thing about dreams is that they are ALWAYS there, whether we know it or not…and even though we may not always be aware of as much, we are always somehow moving towards our dreams. Chronic illness will try you like you’ve never been tried before, but hopefully it will also give you the opportunity to finally–and intentionally–move towards, and accomplish, your dreams.