Most of the time when people hear the words mourning and loss they think about death, which undeniably makes sense, and yet the mourning and loss process is one that occurs around many stages of life. We mourn the ending of relationships and the losses that can come with that. We can mourn the loss of our youth and the physical losses that can accompany that. Mourning multiple losses is also a large piece of coming to terms with living with a chronic illness.
It can be very easy to get lost in clinical conceptualizations when thinking about chronic illness. People can think about symptoms, treatment and prognosis very quickly, and move into an intellectualized active-mode in order to manage the illness that has presented itself. However, it is important not to lose connection with the meanings of all of these clinical realities. What do certain symptoms mean for the person living with them? What does the prognosis and treatment mean for this person? There is no universal answer. For example, for one person living with diabetes, the possible loss of vision may be more painful than the possible loss of motor functioning. Whereas for another person the reverse may be true. The important thing to note is what these losses are and what these losses mean to a specific person.
Physical, Aspirational, & Relational Losses.
The most obvious losses that can come when living with chronic illness are the physical ones. These can range from the most visible, such as losing one’s ability to walk, losing one’s hair, requiring the use of a walker, or loss of lesion-free skin. However, physical losses are not always visible and cannot always be automatically known by others who are not experiencing the illness. For example, loss of energy, loss of vision, loss of a pain-free body, loss of sensation in one’s extremities, loss of bone density or muscle mass, or loss of one’s ability to carry and birth a child. Neither the visible nor the invisible physical losses are universally more significant than the other. The meanings of these losses will depend on each person’s life experience and it is crucial that no one makes assumptions about this but rather takes the time to ask the person living with the illness which loss is the hardest for them. You may very well be surprised.
Sometimes our hopes and dreams are clear-cut. For example, a child training for years to be a ballerina is likely to be hopeful that they will one day dance in a big production. As such, being diagnosed with an illness that would impact physicality would also coexist with the aspirational loss of this dream. For example, a person may have the drive to build their professional career and is looking forward to advancing quickly among the ranks of their organization, as well as participating in side projects. This may become an aspirational loss for this person if they are diagnosed with a chronic illness that limits their physicality, their energy, and requires that a lot of time be spent on managing their illness’ symptoms such as going to multiple medical appointments or treatments.
Our dreams are also not always so obvious, and at times we may not even be aware of them until the possibility for them has been taken away or limited. For example, a very young woman may not realize how much she would like to give birth to a child until she learns that her illness will require a hysterectomy. This example is also likely to be more understandable than some of the other not immediately apparent aspirational losses. We never know what people’s deep hopes are for the future—what trips they may wish to take some day or what desires they have just chosen to never share or truly consider until the possibility has been limited.
Sometimes when living with a chronic illness people may experience losses in their relationships. Again the nature of these losses occurs on a spectrum from actually losing a relationship entirely to losing aspects of a relationship or to changes in the dynamics of a relationship. Unfortunately, sometimes certain people cannot tolerate being in a relationship with someone who has medical needs or who lives with a chronic illness. This is the most blatant type of relational loss a person living with chronic illness can experience. This experience can be extremely painful but luckily is not the most common type of relational loss. Typically these losses can come in the form of lack of understanding. For example, two romantic partners may have always felt attuned to each other’s needs and may have experienced each other as partners who could always be there for each other. However, if one of these partners is diagnosed with a chronic illness, this partner may experience the other partner as not fully understanding them anymore. Similarly, the partner who does not have the illness may now feel like they do not know what their partner needs or wants from them anymore. Something about the nature of this relationship has changed and this can be experienced as a relational loss.
Hope and Mourning.
As I was writing about these three different aspects of loss that can come with living with chronic illness, I found myself fighting the urge to want to follow up each paragraph with positive statements about how one can overcome these multiple losses. This occurred because there is hope and there are positive ways for coping with each of these types of losses. For example, a strained relationship as a result of one partner receiving an illness can be worked through with open and direct communication, either by the couple themselves or with the help of a couples’ counselor. However, I resisted my own desire to write about these hopeful ways of coping because it is important to honor the pain of the losses first before moving into a place of encouragement and hope. The positive can only come once the person experiencing the losses has fully felt the freedom to mourn their multiple losses. Illness can take so much control over one’s body and life and it is therefore crucial to let the person living with the illness have control over when they are ready to find a new way of living that works for them, new goals, new aspirations, new appreciation for their life. Give them their space to mourn. It can also be easy as a person from the outside to want to help because it can be difficult for a person on the outside to watch their loved one suffer or experience multiple losses as a result of illness. However, remember that in forcing your own beliefs on what will be helpful, you may actually be contributing to your loved one experiencing an additional relational loss with you, particularly if this is not a way you would typically interact with your loved one.
The reality is that some of the things lost can never be regained. There is hope for happiness, acceptance, a new way of being and new aspirations. Trying to pretend that there aren't real losses will not speed up the journey to acceptance and motivation, and as mentioned before can even at times be harmful. Mourning first, hope and active coping next, and one day at a time towards acceptance.
This brief description of the losses that people who live with chronic illness experience is very limited and incomplete. Each person's experience with living with illness is unique and the bottom line is that we should never assume what their losses are and how they feel about them. It is always best to ask and to respect how much a person wishes to talk about it at a given time.
If you are living with a chronic illness and are struggling to mourn the losses that have come with that, or if you are living with chronic illness and feel ready to find ways to feel hopeful and actively cope with the losses, please reach out for a consultation. If you have a loved one living with a chronic illness and would like some help with managing your own feelings around your loved one's illness, please reach out for a consultation. If you have any questions about counseling or psychotherapy, feel free to email me at NSkoufalos@GreenTPsychology.com or you may find the FAQ page on GreenTPsychology.com useful.