Most of the time when people hear that one of my areas of specialization is invisible illness, they express never having heard of that term before. People know about chronic illness or mental illness, but invisible illness is not something that is frequently talked about.
Have you ever noticed how much easier it is to show compassion towards others than it is to give that to yourself? Do you find that you are quick to be frustrated with yourself when experiencing physical symptoms of an illness, rather than be compassionate towards yourself? Are you asking yourself right now, "what does self-compassion towards oneself when living with chronic illness even look like?"
Do you live with a chronic illness and find yourself wondering if others who live with illness experience similar feelings to you? Do you find yourself wondering if you are overreacting or whether your feelings are valid? Do others who do not live with illness oftentimes not quite understand why you may be having the feelings that you are having?
You just found out that someone you care about has just received a medical diagnosis and you don't know what to say. You are not alone. This is a common feeling and it is ok to not always know what to do or say. What is important is to try to not react in speech or action without thinking sensitively first.
What happens when a person who lives with a chronic illness finds him/herself in a situation in which s/he has to care for someone else? This can be quite a balancing act and can follow with many feelings, such as confusion, guilt, ambivalence, exhaustion, anxiety, and even depression. How does a person find him/her self in such a situation and what can s/he do about it to cope as best as possible in the given circumstance?
Perhaps the most obvious layer and at times the most uncomfortable is the anxiety and fear that looms a few days, and at times weeks, before a specific appointment. One's initial diagnosis can very often be a traumatic experience which can shatters one's sense of security in the reality s/he believed to be. The what if factor may arise. What if the results of the tests are not good? What if there is an additional diagnosis? What if I am told I need more treatment? What if the treatment recommendations come with side-effects? The list goes on. This fear and anxiety can be maddening.
Many chronic physical illnesses come with changes in the body and in appearance. Sometimes the changes are due to the illness itself, such as rashes on the body and face that may occur when living with lupus. Other times it is the treatment that causes the changes, such as hair loss in patients undergoing chemotherapy or weight gain due to certain medications. Sometimes it is the mind-body connection, where there is no actual physical change but the person living with the physical illness perceives one to exist. What is happening in such cases?
People who live with chronic physical illness may at times feel poorly about their appearance, specifically in comparison to how they looked before receiving a diagnosis. Friends and family may look at the person with the illness and wonder what the person is talking about, s/he looks exactly the same as always. However, s/he does not feel the same as always! This person may hurt when trying to engage in any physical activity, including such basic movement as walking. This person may feel stomach pains when eating certain foods or may just constantly experience nausea and dizziness. In these cases, the body hurts but the person looks the same. Yes in some cases increased pain decreases physical activity which may follow with weight gain, but this is not what is now being described and rather people whose appearance has actually not changed is being discussed.
It is hard to imagine how connected the mind and body are, to the point that what you feel in your body can be what you perceive mentally or in your mind, even if that is not what is objectively there. For example, "I feel so disgusting today (meaning I feel physically sick) but when I feel this sick I look disgusting too." The days of understanding the human body as a seperate entity from our mind, including our emotions, perceptions, and thoughts, are over. Being chronically ill not only affects one's health but it can shake up one's entire perception of oneself.
It can be a frightening thought to think that what my body does/feels can affect how I perceive myself, my body image, my appearance, and my self-esteem. It can leave one feeling as if s/he has little control. However, it is important not to forget that the connection is not unidirectional. To the extent that how you physically feel can influence your perceptions, your perceptions can also affect how you physically feel. There are multiple techniques for changing how you see yourself and the world that can distract you from your physical symptoms and even lessen them. Some might even suggests cure...but that is something to be discussed with your individual doctor.
So it can go a couple of ways: 1. I hate how I feel right now (physically), I look disgusting and don't really want to go anywhere. 2. I feel gross (physically) but I am going to do something nice for myself anyway because I might as well show myself some kindness since my illness is not. Oh... and I just realized that this illness does not have complete control over me! 3. Ok so maybe today I feel too sick to take a shower and get dressed and I just need to stay in my pjs in bed, but that does not mean tomorrow has to be the same.
People must take care of both mind and body, especially when one is particularly weak, the other can help balance and pick up the slack so to speak. Everything within you is connected. You are not just a body or just a bunch of thoughts, but rather a whole person, whose entire being must be cared for and nurtured. Take some time to think about why you may feel so badly about your appearance when you objectively look the same. Maybe it is because your body hurts and is sufferring. Does your mind have to suffer too or can it be the healthy part of you, helping to maintain balance in your being? This is not an easy task and you might need some help from a support group or a psychologist; however it is not an impossible task. It is a real possibility!