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? not live with illness to understand. However, when speaking to others who live with illness or others who have loved ones who live with illness, it becomes apparent that these feelings are common and completely normal.
You are not alone! There are many emotional experiences that people who live with chronic illness have that are sometimes difficult for people who do not live with illness to understand. However, when speaking to others who live with illness or others who have loved ones who live with illness, it becomes apparent that these feelings are common and completely normal.
One. Difficulty Committing
Imagine the following scenario: A young woman with an active autoimmune disease is invited to a party that is occurring next weekend. The host of the party is requesting a definite RSVP for planning purposes. The young woman procrastinates in responding and when asked about whether or not she will be attending gives a non-committal answer, such as "probably but we will see" or avoids the question and changes the subject.
From an outside perspective, this young woman's reply appears to be rude and inconsiderate. However, from the vantage point of the young woman, there is difficulty in committing to the party because of the unpredictability of her illness and her frustration in having to cancel plans more often than she would like. It may feel embarrassing to her to be considered a "flake" for often having to change plans last minute, and delaying her response to an RSVP could be her way of managing these unpredictabilties.
One may be right in noting that this may not be the healthiest way in dealing with the illness, and there are certainly better ways of coping that one can learn through chronic illness counseling. However, that is a separate discussion and the purpose at this point is to simply understand the experience of and maybe even empathize with the person who is living with the illness.
Two. Why Aren't You Listening:
Many people who live with chronic illness have to restrict themselves from certain things that most people consider part of daily life. For example, drinking alcohol is a non negotiable for certain people who have diseases of the liver or who are taking types of medication that already damage the liver or interact poorly with alcohol. Other illnesses restrict people from being in the sunlight for too long. People with other types of illnesses have physical restrictions, including being unable to walk for long periods of time.
Something that people who live with chronic illness frequently complain about is having to explain to people why they are not participating in these everyday things. This itself can be frustrating, but even more frustrating is having explained the "whys" and then feeling unheard. Of course others do not mean to forget, but sometimes they do for a variety of reasons. It can be hard to remember that even though the challenges that come with the chronic illness are an everyday part of your life when living with the illness, it is likely completely foreign to others, and will require some time to really learn and understand. However, this can often be experienced as people not listening to you or not taking sufficient interest in your struggles.
Again, this is something that can be dealt with in an adaptive and healthy manner. Until this is learned however, this can be a frustrating and upsetting experience.
Three. I Don't Have Energy to Take Care of You
Disclosing your illness to another person is a difficult experience in itself for multiple reasons related to your own feelings about living with the illness. However, the other person's reaction to your sharing about the illness can also make this experience very difficult. Some people, because they really care and worry about you, may start to cry or panic in response. There is a disconnect here about who needs to be taken care of. The person with the illness may already be feeling vulnerable and may need a supportive presence from the other person. This is not to say that the other person should be callous and cold. However it can feel extremely frustrating and can discouragepeople with illness from disclosing, if they feel as if they need to then take care of others.
There are ways to manage this type of scenario in an adaptive way in order to feel supported and have your needs met. Chronic illness counseling and support groups address such issues.
Last Thoughts
Not everyone who lives with chronic illness will experience the aforementioned situations, feelings, and frustrations, but many will. Whatever your feelings and frustrations are when living with chronic illness, you are not the only one who is having them. Connecting with others who are going through a similar experience can be extremely helpful in learning how to live well with your illness. Find a support group in person or on-line, and if you need extra help reach out to a counselor.
If you are struggling to manage chronic pain or chronic illness, I would be happy to schedule a consultation with you. If you have general questions about psychotherapy, you may find the FAQ page on my website www.GreenTPsychology.com useful.