"Help! I can't pull up my Bootstraps!"
In the fast-paced, “pull yourself up by your bootstraps” world we live in, it can be challenging to live with a chronic condition. It is even more challenging when there is little or no support. Friends and family may mean well when they try to help someone get back to “normal.” For someone living with a chronic condition, that may be impossible.
To better understand how to care for someone with a chronic condition, we first must define a Chronic Condition. From a medical standpoint, it is a condition that lasts for more than 3 months. Chronic conditions include Diabetes, Cardiovascular Disease, Chronic Obstructive Pulmonary Disease, Asthma, Cancer, Arthritis, Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Parkinson’s, and many others. According to the CDC, 78% of adults over the age of 55 have at least one chronic condition. For adults over 65, that number increases to 85%.
Chronic conditions also include mental health diagnoses of Anxiety, Depression, PTSD, Bipolar, and many others as well. The National Center for Health Statistics show that roughly 31% of adults 18 years and older have symptoms of anxiety and 26% have symptoms of depression. The truth is, we all know at least one person with a physical or mental chronic condition. These are conditions that most likely do not have a treatment that will make them go away forever. In several cases, these are conditions that one must live with indefinitely.
We often think of medical care in terms of acute, or short-term care. For example, a broken bone. Within several weeks, it has healed, and we are close or completely back to what are capabilities were prior to the break. If you get a cold or flu, within a few days we are back to “normal.” We rest, let whatever heal, then we get back to our “normal lives.” This mentality may work for these types of acute issues, but not for chronic ones.
Those living with a chronic condition will not get “back” to normal. They will have to find their NEW normal. Their life now includes this condition. In many cases, their life must revolve around this condition. Their routine, outlook, schedule, thoughts, feelings can all be determined by the chronic condition. “Pulling themselves up by their bootstraps” does not apply here.
If we truly want to help someone with a chronic condition for whom we care, we must first start with empathy. We must understand from where our loved one is coming, to see it from their perspective, not our own. Ask questions. Try to gain a better understanding of their condition, their wants, and their needs. We must put aside our preconceived notions and be open to new information. Remove judgement, shame, or blame from our thoughts and truly seek to understand.
In some respect, our desire for our loved one to get better has more to do with our own discomfort in the situation than the person’s need for rehabilitation. The faster the person recovers, the faster we don’t have to help anymore. If we can get them back to their normal, then we can get back to ours. As above, don’t judge or shame yourself, if this paragraph is describing you.
Allow the person with the chronic condition to guide you. They are in the driver’s seat. Caregiver’s can be the navigators, the passengers, and sometimes the tow truck. Take time to learn about the condition, not just from their perspective, but through medical journals, and other credible sources. This information can be critical when knowing how gently to nudge or push someone forward, or if at all. It can help us to understand that not everything needs to be or can be fixed.
Finally, be willing to be vulnerable. The person with the condition must be vulnerable for you to be able to help them. Admitting our own shortfalls, ignorance, and mistakes keeps the communication flowing both ways. The more that is known and understood between caregiver and care recipient, the better. It is not going to be a linear path. It won’t be done right the first time, or even the fifth. Patience, empathy, and humility are the best forms of care we can provide. It is okay to help someone pull up their bootstraps. Someday, maybe they can return the favor!