Arria Deepwater

@arria-deepwater | contributor
Arria Deepwater is a chocolate-loving, storytelling, spiritual health-nut who lives with a chronic debilitating condition. She’s been wondering lately if limitation itself, not our capacity to overcome it, may hold the key to revealing our true humanity and is exploring ways of nurturing peace and well-being for all. You can learn more about her and her work at arriadeepwater.com

Why People With Chronic Illness or Disabilities May Not Ask for Help

Life with chronic illness or disability can be full of challenges. I have often been counseled to identify my needs and ask clearly for help, and we may need to request help far more often than others. However, needing help (and feeling vulnerable) is deeply entwined with the experience of security and dignity. Managing our symptoms, our circumstances and the feelings they trigger can add layers of difficultly to asking for and securing the help we need. Here are six reasons people with chronic illness or disabilities may not always ask for help when we need it. 1. The Reaction Hesitation Unfortunately, due to the conditions of our daily lives, we sometimes need to ask for help from unknown or potentially untrustworthy sources. Many of us have been judged or shamed because we asked for help. Some of us don’t have reliable caregivers. Additionally, it can be difficult to nurture friendships and make helpful connections when living with chronic debilitation. I’ve found it is not uncommon to be met with something less than kindness when we ask for help. Sometimes we don’t ask because we’re still hurting from the last time we did. 2. The Chaos Complication Unfortunately, some truly well-intentioned people may not make the most effective helpers. Their help can come surrounded in a cloud of chaos, requiring creativity and patience on our part to secure. It may become necessary to constrict or refuse their efforts to contribute. Ironically, this can create more confusion and they may believe we have difficulty identifying and communicating our needs. Sometimes we don’t ask because the help, no matter how generous, is unpredictable, and securing it can be too complicated and difficult. 3. The Communication Contortion Securing assistance as efficiently as possible often depends upon our ability to communicate well. Unfortunately, sometimes we can barely speak. During painful and constrictive episodes, we may need to do backflips and cartwheels of communication to make ourselves understood. Sometimes we don’t ask because genuine challenges to communication exist, and in the moment, we are in too much pain to overcome them. 4. The Buy-in Barrier Some potential helpers hesitate if they don’t understand why a specific request is being made, and they may need to be convinced that a valid need exists. This can place us in the position of inspiring mental/emotional empathy in the other. In these cases, it is not often enough to simply ask for help. Alternately, a would-be helper can have too much buy-in. They may be overly attached to helping. They can project (often false or exaggerated) needs onto us and compulsively insert themselves into the situation. Attention and energy is required to mitigate or deflect their efforts, maintain boundaries and nurture a truly empathetic perspective. Sometimes we don’t ask because needing to inspire empathy in another can be too difficult and demoralizing. 5. The Facilitation Failure A great deal of effort may be required on our part to secure the necessary help. Sometimes it requires months of nightmarish bureaucracy to receive therapeutic or financial support, or personal support systems may have to be built from scratch. At other times, it simply means giving a few instructions or adapting in a seemingly small way, but even that can be too much for us. Regardless, putting in the work may be our only option. It can feel profoundly draining and discouraging. Sometimes we don’t ask because we may be too exhausted to facilitate the process of receiving help. 6. The Attitude Adjustment Sometimes the person with the authority to either grant or withhold help may expect us to exude a sunny positivity, resilience or optimism. Deliberate or not, prescribing a specific attitude as a prerequisite for receiving help, can act as a threat to the well-being and basic security of a person living with chronic illness or disability. Sometimes we don’t ask because we can’t find the energy to demonstrate or prove how hard we are trying. It can be very important, both for those living with illness and disability as well as for those who love us, to share about the process of asking for and offering help. What examples of asking fatigue have you experienced or encountered?

My 3 Intentions for the New Year as a Person With a Chronic Illness

I’m not a big fan of traditional New Year’s resolutions, especially since it can take so much practice (and failure) to learn how to balance personal desire with the limitations of illness and disability. I do find, however, that December and January, in the darkness and quiet of winter, is an excellent time for reflection and clarifying intentions. From this vantage point, 2016 is going to be an interesting year! 1. Harmonizing creativity and patience. Creativity isn’t naturally patient, at least not for me. It has a fiery momentum and a desire to move towards itself in the outer world. Creativity spills over with enthusiasm and doesn’t care much about limitation. Recently I have been blessed to experience a greater level of creativity but also challenged with how to express it in a healthy way. To be authentic and honor my health, it’s important I recognize that creativity isn’t an indulgence, an escape or something that surpasses limitation. It’s a part of me and, like all parts of me, is confined and shaped by the illness I live with. And so I have introduced creativity to patience. Their first meeting didn’t go especially well. Throughout 2016, I intend to invite these two practices to spend as much time playing together as possible. They may not like each other much now, but I think they can learn to live in harmony. 2. Exploring my sexuality. I have lived with chronic illness all my life. As a result, my sense of myself as a sexual being has been heavily influenced by it. Unfortunately, that influence has been negative. As I embrace my mid-40s, it occurs to me that I’ve never allowed myself the gift of developing my sexual health. I think it’s time. So I have been wondering lately. What is my sexual identity as a disabled woman? How can I connect more fully with my sensual nature without inviting experiences that are too intense for my hyper-sensitive physiology? Can my body “wake up” in this way and can it nurture my overall health? Considering all of my limitations, celibacy is still the healthiest and most practical path, and the challenges to exploring questions like these are not inconsequential. 2016, however, will be my year for experimenting, as I am able, with techniques like tantric meditation, yoni yoga and creative visualization. 3. Befriending the wild nature of illness. Over the years, I have enacted resolutions to deepen self-love and grow in a healthy, resilient relationship with my body. In general, I have experienced great success. Lately a new calling has been emerging. With my lifestyle being decidedly healthy and my degree of functioning stabilized at a very low level, I’ve opened my heart and mind to a new way of relating. There is nothing unnatural about illness or its limitations. It is life, being itself. It is an opportunity to remember my place in the natural world, where I am not the general manager of the universe. I am a part of a living, breathing, inter-connected ecosystem. Just as human activity has a great impact on the climate of the Earth, I also have the capacity to influence the climate of my health. But the weather is not mine to control. There is something beguilingly, and sometimes frighteningly, wild about illness. In 2016, I intend to build a stronger relationship with this wildness — and see where it takes me. Follow this journey on Small Acts of Devotion. The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. Lead photo source: Thinkstock Images