By Halcyon

Life is hard. From the moment we open our infant eyes to the blinding white of a delivery room until we follow that light to places unknown, it seems there’s always something trying to stand in our way. There are days when all you want to do is give in, let it take over, and be swept away to anywhere but here. In her new series The Awakening, Halcyon hopes that giving us a lifeline will help us find our way back.

The Awakening Series: Coping with Chronic Illness

Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way through it. (Michael J. Fox)

In this installment of my Awakening series, we are going to search for ways of being present in the face of adversity, whether it is chronic or terminal illness, or just the struggles we encounter in our day to day lives. Being present in life is not easy, and most of us coast through it without truly being there and without truly being aware of what a gift it is to have this life at all.

During the first part of this series, I was struggling without a clear diagnosis. Though I knew it lay in part to structural issues resulting from many years of wear and tear from competitive gymnastics and running, after eighteen months with no definitive answers and many treatment attempts, for the most, it just became long-term, chronic pain.

In the time in-between diagnoses, you flounder. There is an enormity of emotional suffering compounded by shame. People do not understand the nature of chronic illness – regardless if it is one that has more scientific data behind it, like multiple sclerosis, or something like fibromyalgia, that seems to be shrouded in mystery and confusion. I think I am lucky because one thing that has helped me to be an advocate for myself and others has been my inherent curiosity and scientific mind. When I got my diagnosis of fibromyalgia (along with a pending diagnosis of rheumatoid arthritis) I researched everything (and still do) and connected with various fibromyalgia communities.

What I found is a vast sea of helplessness and hopelessness, and one not limited to this community. Across the board of chronic illness, for which many of us do not look as though we are ill, there seems to be a questioning of whether or not we are genuinely ill, or are just lazy hypochondriacs seeking attention. It is also not a sentiment solely regarded by the average citizen, friend or colleague, but one rampant in the medical community, as well. My own experiences until finding my current doctor were along the lines of, “Fibromyalgia is a bullshit diagnosis,” or, “Just exercise and lose some weight and you will feel better,” and a pain management doctor who treated me like I was a drug seeker, humiliating me in front of the daughter who had come with me.

I think it’s very easy to become sucked into the vortex of self-pity, with equal helpings of self-loathing and shame, and a sprinkling of lamentation for the situation you find yourself in on top. Even before a solid diagnosis, you know your life has changed in a very un-alterable way. In the beginning, you cling to the hope that treatment will help, and that these people who have devoted themselves to school and study about the human body and diseases, will be able to come up with a plan that works for you. But after months of exhausting every option, while trying to remain positive, you are suddenly confronted with a grim sort of reckoning about the situation, and the reality sets in at last. We settle for management of our pain and hope that it will afford us some vague recollection of our pre-diagnosis self, when in fact we inherently understand, and perhaps even accept on some molecular level, that who we once were is gone.

Though I have never faced terminal illness myself, I have friends who have, and there is a similar path. In the end, you need to come to some sort of acceptance. From there, you can begin a process of self-healing and being present in your life for whatever amount you have left. This is where I believe self-compassion and mindfulness come into play.

Mindfulness is a practice that helps you to stay in the present moment. It is often described as becoming aware of that present moment experience in a way that is free from judgmental thoughts and personal preferences. There is a clear difference between the quality of awareness brought forth by mindfulness and the awareness one might otherwise have in day-to-day life. Sadly, we are not often very mindful in our everyday lives, and our awareness becomes reactive to those thoughts and preferences, which takes away from the present moment.

The best way to stay in the moment is to re-engage with the body:

* It is your body, not your thoughts, judgments, or beliefs, that stays in the present moment.
* Re-engaging with the body also includes enaging the senses: Touch, taste, sight, sound, and smell. Through this re-engaging, you learn you have a choice where you place your attention, and it should bring with it a measure of peace and stability.
* While acknowledged, those questioning thoughts, feelings of self-loathing, or berating yourself, are understood not to be reality.
* You learn to create a buffer between those thoughts and your mind, keeping them at a distance.
* Those thoughts and ideas no longer absorb your attention.

The practice of self-compassion is a way of being in which you maintain a balanced, non-judgmental awareness of difficult experiences and maintain a desire to alleviate those difficulties, while recognizing it is a perfectly normal part of being human to experience difficulties in life. This requires a deep understanding of mindfulness, the ability to balance mindfulness with self-kindness (rather than self-judgment), and effort put into refraining from isolation.

Self-kindness is a practice that can seem strange at first. It is literally relating to oneself with an attitude of kindness and regarding oneself with gentleness, patience, and reassurance. An effort is made to change the tone of your inner voice to something soft and embracing.

* Use phrases like, “It’s ok,” and, “Don’t worry.” It is often recognized through this practice that there is an obvious lack of self-kindness and that when it is offered, it is conditional. Many times, it is only offered when you are able to achieve certain tasks that you feel are important. (Example: “I’ll lay down and rest or take a nap once I get X amount of chores done today,” or, “I’ll feel really good about myself when I get that project done by a certain time.”) When you do this, what you are actually doing is saying that you do not deserve kindness without conditions, and when you do not meet the goal set it propagates feelings of worthlessness.
* Offer yourself unconditional kindness. You will be more relaxed, your head will be clearer, and you will find you are kinder to others as well.
* Regular practice will make it easier. You cannot undo a lifetime of behavior in a few sessions. Do not be discouraged. Try using this mantra often, especially when you get discouraged: “Don’t worry, this is hard, but you’ll be okay.” You may still self-blame and criticize, but it will get better, and eventually, will be replaced by better habits.

Self-isolation happens when you devalue yourself and self-criticize so often that you forget you are not alone in the universe. Through these practices, there will be an eventual awakening of your spirit. It will bring with it an understanding that no matter how alone you feel, going through whatever situation or illness has presented itself, that everyone, everywhere, is going through something. Life is often a battle filled with hardships that are not written across our flesh for others to see. but instead written in our soul. By engaging with people, listening to others, and empathizing, you begin to see that although everyone’s battle is different, we are all faced with difficult emotions, we all judge ourselves, and we all experience feelings like shame, anxiety, anger, and depression.

The action of being present and mindful in our lives and those we care about is a lifetime process. You don’t exercise these ideas and tips for one week and then call it done, believing that somehow you are now mindful and present and don’t have to work on it. It is a state of being that requires work, and that you will sometimes fail at, but keep trying. The benefits of being mindful and present are known to have effects on all aspects of our lives, even our health. When you look inward and re-engage with the body, and simply honor the fact that you are in pain, without any self-judgment or self-loathing for it, the body relaxes.

The National Institute of Health [NIH] has many articles on mindfulness-based stress reduction as a way to help those who are chronically ill, but you certainly don’t need to be chronically ill to begin practicing it.