Misunderstood

There can be a lot of people in the lives of those who live with chronic illness and yet oftentimes people with chronic illness can feel very lonely. Before being diagnosed with chronic illness many have very active social lives, many friends, and make frequent plans or activities. Sometimes the ability to manage this aspect of one’s life changes drastically when one’s health is compromised. There may be new experiences that a person living with a chronic illness might need to deal with, such as extreme fatigue and pain, frequent doctors’ visits, tedious exercise or dietary regimens, or lots and lots of rest and quiet time. These new and usually unwanted pieces of one’s life take up a lot of space, a lot of a person’s free time, and sometimes their not-so-free time as well. There are moments when someone’s loved ones may not understand the necessary adjustments that have been made and could be offended, feel abandoned, neglected, or dismissed.

At times it can be hard for the person living with the illness to explain to their loved ones why they have been spending less time with them. For example, having to describe to many different people the adjustments made in his or her life as a result of the illness may be a reminder of the illness, that the person may not necessarily want to be reminded of in a given moment or larger time period. Imagine saying over and over “it is not that I don’t want to come out tonight but I am really exhausted and in a lot of pain.” The person suffering from the exhaustion and pain probably feels really bad that they can’t go out and may even feel guilty for not being able to do so, and repeating that over and over to their loved ones could be frustrating. Sometimes people living with a chronic illness may become so tired of repeating the necessity for the adjustments in their life to others that they may just retreat and no longer offer any explanations to others, in hopes that after a certain point it is just understood that their lives have had to drastically change. However, providing information to loved ones about why major changes in one’s social life have occurred does not always mean that loved ones will understand. Regardless of which of the above scenarios is played out, people living with chronic illness can at times feel lonely and misunderstood when their loved ones react to their adjustments with disappointment, hurt, and anger. The life changes that have been made, which certainly affect the person with the illness’ social life are never made to disrupt one’s relationships, but rather are made to help the person with the chronic illness maintain a good quality of life, as much health as possible, and happiness. This may seem selfish, but the alternative may be worse—exhaustion, deterioration of health, and maybe even resentment towards the loved ones who may desire more than it is possible for you to give at a particular time.

To ask one’s loved ones to learn to understand what it is like to live with a chronic illness is a huge undertaking. It is a struggle because the loved ones are not experiencing what the person with the illness is—they can only try their best to know what it is like. Some loved ones will be better at it than others, and some loved ones may not be able to adjust to the adjustments that the person with the illness has had to make, which has affected his or her relationships. All that can be done is communication. Nobody wants to be misunderstood. If you feel ready to try to explain to your loved ones what it is like to be living with your illness and why it has affected your relationships, then it is best to do so. You won’t feel so lonely if your loved ones can understand. If they do not then you accept it, know that the changes that you have made in your life are misunderstood, and hope that at some point they can accept you. More importantly you must accept the changes in your life that have now become part of you.