Monday, December 10, 2018
What We Need From You
Chronic illness is a challenge, period. It's a challenge for those who live with the illness on a daily basis, for caregivers of the ill person, and for those who are involved with the person outside of the home. Chronic illness often leaves those in its wake feeling frustrated and helpless. The ill person struggles to live daily life with the symptoms of chronic illness and friends and family are limited on what they can do to help the ill person. To make matters worse, those of us with chronic illness are often hesitant to ask for help from others due to feeling burdensome and are frequently at a loss ourselves as to what may be helpful. To help all of us, here's a list of things we need from you due to chronic illness.
We need you to be available.
Chronic illness can be extremely isolating at times, particularly if it is a rare disease. Depending on the diagnosis, it can be difficult to identify and communicate with others with the same illness. Social media has helped close the distance among individuals with the same illness but in person visits remain different from online communications. We are further isolated due to difficulty to physically leave our homes except for our medical appointments. Even when we want to visit with others we may not physically feel up to visiting regardless of the communication form. We frequently experience hospitalizations and may only experience encounters with medical providers. Your presence in person, on the phone, or online is a tremendous support to us when we are able to do so.
We need you to listen and encourage.
Due to the elevated risk of isolation among those with chronic illness, we are at higher risk for depression. We easily become frustrated, discouraged, and depressed regarding our health issues and daily struggles. Your willingness to listen to our concerns and to encourage us along the way has an immense impact on our mental health.
We need you to be understanding and forgiving.
Changes in our health and abilities often causes us to feel angry and frustrated as we are adjusting to chronic illness. Furthermore, when we don't feel well we may be ill tempered. We don't mean to direct our frustrations and anger toward others. A gentle reminder when we are acting unfair will help us to realize any damaging behavior and allow us the chance to correct any harmful behavior. Your understanding and forgiveness is paramount in this process.
We need you to help us feel accepted and loved.
Chronic illness typically means changes to our bodies and abilities that may not be visible to others but we remain acutely aware of such changes. We may have difficulty accepting such changes and become insecure and self-conscious of our bodies, symptoms we are experiencing, abilities, and our self-worth. We all want to be accepted by others and this desire may be heightened by chronic illness. Your acceptance helps us to accept ourselves when we are struggling with self-love and acceptance.
We may need your physical assistance.
Chronic illness is high maintenance requiring ongoing medical management that includes frequent medical appointments, tests, procedures, medications and more. These tasks are demanding physically and mentally. As abilities are challenged by chronic illness, we may require your physical assistance in the form of transportation to appointments, assistance obtaining and taking medications, household chores such as cooking, shopping, and cleaning. Changes in our abilities often leaves us feeling as a burden on others resulting in our hesitancy to ask for physical assistance even when it is greatly needed.
We may need you to help us find assistance.
Chronic illness can easily create financial difficulty due to inability to work temporarily or permanently. Our finances may easily be overcome with medical expenses. Locating appropriate resources is not an easy task when one is sick. Therefore, your assistance in locating and applying for resources may be of great service to us during a time that we are having difficulty physically or mentally functioning.
We need you to help advocate.
As a patient, we benefit from advocating for ourselves but your advocacy on our behalf would also be advantageous. We may not always have the physical fortitude to speak up or we may forget questions to ask. You can help us by attending appointments with us and listening to the information presented by medical providers. Additionally, advocacy efforts on a larger scale directed toward public awareness and legislation are stronger with participation by patients and loved ones.
We need you to help us enhance our physical comfort.
Chronic illness often is exacerbated by physical symptoms that are distressing and even painful. We've learned little tricks to help ease our discomfort such as using heating pads, rubbing a painful body spot, or even taking a nap. When you are near, you can help by handing us objects such as a heating pad or our medication so that we may limit our movements, particularly when movement is painful. Sometimes a gentle rub on the afflicted body part or even something as simple as playing with our hair can be soothing. We often fight fatigue that negatively affects our sleep schedules. In such cases, helping us limit our nap time will help us maintain an appropriate sleep schedule while boosting our energy.
We need you to take care of yourself.
Lastly, we realize that providing care and comfort to a chronically ill person can be difficult on others and want your well-being to be taken care of as well. Caregiver burnout can be detrimental to all involved and the last thing we want is our illness to be harmful to you. We understand that one cannot provide around the clock care for us and maintain one's own well-being. Self-care is important for everyone, not just those with chronic illness.
We may not say it enough but all your efforts to support and assist us in the walk of chronic illness is greatly appreciated and we are far better off with you in our lives than without you. We thank you for all your efforts.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.