Living with a chronic medical condition is a circumstance that is very close to my own heart. I have lived with a chronic illness my entire adult life, and I'm not alone. According to the Centers for Disease Control, 129 million Americans currently live with some type of chronic condition, whether it's a physical or mental health condition. That's nearly half the current population of the United States. Therefore, many of us struggle regularly to manage a condition that cannot be cured. For the purposes of this blog, I will focus on chronic physical conditions and how to cope with them while doing your best to sustain your overall health and well-being.
One of the most important things to remember when a chronic illness takes up residence in your body is that you are not imagining an illness. Whether you are diagnosed with a condition that medical doctors are confident they know how to manage, or one that seems to elude medical science in terms of our understanding of its nature and course, it is real. The fact that physicians and scientists have yet to fully understand its origin, symptoms, or impact on your life does not mean that you are exaggerating its impact on your everyday functioning.
It is also important to remember that people who do not live with a chronic physical condition will not fully understand what has happened to you and what will continue to be your battle. They may mean well and sympathize with your pain to an extent. Some of them will give you a lot of advice, like “just reduce your stress” or “get more rest.” But they won't truly grasp how a chronic condition re-shapes your life, impacts your decisions, and affects your relationships. Remember that you don't have to buy into what others tell you about your chronic physical illness. For example, proper diet and exercise won't be the cure for your condition, and just believing that you can isn’t enough to overcome the illness.
It is true, however, that you don't have to be defined by your chronic condition. In most cases, you do not have to completely surrender to its consequences. You can still enjoy life. There are many ways to manage the symptoms and setbacks without missing out on your activities and interests. Of course, there are always exceptions, and some people are severely limited in their functioning as the illness progresses. But there are many ways to adapt to life with a chronic illness, and that's the focus of this blog post.
Here are some things to consider as you navigate life with a chronic physical health condition that will help you maintain your mental health and overall well-being.
Practice self compassion. Most of us feel bad about ourselves when our chronic illness delays or changes our plans. We think that if we are just stronger and more resilient, we should be able to push through. However, often the best way to take care of ourselves is not to push ourselves too hard. We can still do many things, but maybe not at the same pace as others or even at the same pace that we used to. The end goal is longevity, but if we push ourselves hard, we end up feeling sicker. Remind yourself that you are still strong even on days that you feel weaker.
Determine your daily activities according to your level of pain and symptoms. This may sound basic, but you'd be surprised how many people I talk to who try to do the same activities, regardless of their level of pain. When you wake up in the morning, rate your pain on a scale from one to five. A pain level of two means you may be able to go on about your daily plans. A pain level of four or five means you adjust your activities. For example, if you planned to go for a walk and you woke up feeling tired, achy, or nauseous, you can decide to go for a shorter walk instead, or perhaps skip the walk until later in the day if you feel better. When you live with an illness, you must acknowledge that sometimes plans change, and activities may need to be rescheduled or adjusted.
Leave the house prepared. You may wake up feeling pretty good and go on about your day. But later you start feeling exhausted or having other symptoms and you don’t have medicine, water, or a snack. Think about how you may feel at the end of your day before it begins, so that you're prepared to have what you need to take care of yourself and give yourself permission to come home early. Be prepared if you have a long day ahead of you to rearrange plans if necessary. Try to resist being set in your mind that the day has to go a certain way.
Gather your best social support. The support system that we acquire overtime is not always prepared to handle our circumstances. We make friends in high school or college that may continue to be our friends, but they might not be the best person to call if we are having a bad health day. Make sure you have friends in your circle who understand your health condition, or at least make an effort to do so. While they may not be able to put themselves in your shoes, they should be able to provide compassion and to give you a pass if you have to change plans.
Assemble a medical team who understands you. Similar to your friend group, you want to surround yourself with healthcare providers who do not dismiss or minimize your health condition. Not all trained professionals are as adept at treating chronic conditions. Sometimes, even if they are trained, they don't have enough empathy to adequately support you. For example, you want a doctor who listens to your symptoms without interrupting and considers your unique experience, rather than one who dismisses the reality of your condition and gives you generic advice. We don't always get to choose our healthcare providers, but if you do have a say in the matter, select those who will walk beside you on your journey with chronic illness.
The chronic illness that you live with is your reality. Don’t let other people minimize that. Be true to what you feel and listen to your own body. Get the resources that you need rather than doing what other people think you need to do. By listening to your own instincts, you’ll be able to better manage life with a chronic illness.
This blog was originally published on psychologytoday.com.
Image: mcreynoldsphd via Canvas