Relationships and Living with an Illness or Hereditary Predisposition

Daily life changes in many ways when you learn about a hereditary predisposition to illness, not to mention falling ill yourself. The future of the partners, or the entire family, becomes uncertain in many aspects. This situation challenges both partners to also turn their gaze toward each other and to update their relationship to match the new life circumstance. An illness or unexpected information about a hereditary predisposition often causes a crisis in a relationship, to which partners frequently react at different times and in different ways. While one may start taking active measures and sorting out practical matters, the other might become completely paralyzed. This challenging situation can drive a couple further apart, but it can also bring more intimacy or shared connection into the relationship. All changes within a relationship are different and unique. They are influenced by the partners’ life histories, as well as their current life situation and personal resources.

Impacts on the Relationship

An illness alters the perception of oneself, one’s capability, and one’s functionality through various symptoms, medications, and procedures. This also impacts our relationship. The carrier of a hereditary predisposition or the partner who has fallen ill may feel defective and inadequate; they may feel angry and disappointed with their life and themselves. The partner’s emotions can include frustration, anger, hopelessness, and helplessness. With long-lasting anger and disappointment, there is a risk that over time they will turn into bitterness and cynicism toward life. How could one accept these difficult things as a part of life and strive to live a good life despite them?

Both the carrier of the syndrome or the ill partner and their spouse should receive support for themselves, their emotions, and processing them. Information about a hereditary predisposition can bring about a sense of loss similar to what falling ill often does. Letting go is not easy, and it is frequently associated with emotions experienced as difficult, such as grief, disappointment, and anger. These kinds of feelings are completely normal. It is important to distinguish that these emotions are directed at the situation, the syndrome, or the illness—and not at the partner standing by your side.

The Impacts of a Syndrome or Illness on Sexuality

Information about a hereditary predisposition, much like falling ill, shakes one’s self-concept and self-image. It also affects the perception of one’s own sexuality and its role in the relationship. When you receive support for processing the feelings, thoughts, and experiences triggered by the situation, you can, over time, accept the syndrome as a part of yourself and your identity. Embracing the matter supports the strengthening of self-esteem and the expression of one’s sexuality. Support for this process can be obtained from your partner, healthcare professionals, as well as experts from patient organizations and peers.

It is well known that when a person is unwell, sexual desire decreases. When ill, one may experience shame for not being able to function normally. Feelings of shame cause a lack of desire and withdrawal from the relationship, as well as from sexual intercourse and other everyday intimacy. This further increases the distance between partners and leads to more withdrawal from closeness. Openness and talking about the matter would be important, even when it feels difficult. In a relationship, it is worth striving for a safe and relaxed atmosphere, allowing you to work together to find new ways to show affection and express your sexuality. That way, the challenges are easier to overcome.

Support for the Situation (in Finnish)

Tukea parisuhteen kysymyksissä tarjoavat Väestöliiton Parisuhdekeskus Kataja

Parisuhdeteemainen päivystys chat

Yhdessä vahvemmaksi – Opas parisuhteen tueksi, kun perheessä on sairautta

This text was written by Laura Huuskonen, an expert from Parisuhdekeskus Kataja ry. The original article was published in Finnish and has been translated into English.

Sharing Your Diagnosis with a New Partner

How to Tell a New Partner About Your Syndrome or Illness

When discussing a serious and potentially hereditary predisposition to illness (often referred to as a syndrome) or an illness itself, it places the carrier in a difficult situation and introduces many choices along their life path. If the information about a predisposition to illness is known at a young age, it can affect the formation of dating relationships. Especially in the early stages of dating or when just getting to know someone, many wonder when and how it would be best to share information about the syndrome or illness. The reception and reaction of a new person can cause anxiety or even fear, as one cannot know for certain how the other will react to the matter.

Open Discussion Prevents Misunderstandings

When you share information about the syndrome or illness while still getting to know each other, you avoid misunderstandings later on. Often, an open discussion about the topic eases the minds of all parties in the relationship: when the subject is talked about, it becomes easier to understand the other person. However, discussing one’s own situation is not always easy. When talking feels difficult, other methods of communication can be applied. Patient organizations provide reliable and understandable information, and potentially also material specifically aimed at loved ones. Reading reliable information can serve as a good foundation for a discussion. It also gives the other party time to process the information, making the conversation potentially more comfortable for both and making it easier to put thoughts and feelings into words.

Respecting the Boundaries of the Other

It is also good to openly discuss the ground rules for talking about the subject. A hereditary predisposition to illness, much like falling ill, is a personal and often intimate matter, so it is only fair that the discussion progresses with suitable sensitivity and respect for one’s boundaries. Talking about the topic and sharing information is not always natural, and it can be difficult for a partner to understand how the other person feels.

However, the most important thing for the carrier of the syndrome or illness to understand is that even if one’s situation is hard to comprehend, or if the illness has severe symptoms or requires a lot of care, one does not have to settle for any less respect or poorer treatment because of it. Everyone deserves a gentle relationship that provides support and safety. Each and every party in a relationship is equal and entitled to express their opinion and participate in decision-making.

Support for the Situation (in Finnish)

Tukea parisuhteen kysymyksissä tarjoavat Väestöliiton Parisuhdekeskus Kataja

Parisuhdeteemainen päivysty chat

Yhdessä vahvemmaksi – Opas parisuhteen tueksi, kun perheessä on sairautta

This text was written by Laura Huuskonen, an expert from Parisuhdekeskus Kataja ry. The original article was published in Finnish and has been translated into English.