Leonardo and Anna have been married for several years. Shortly after their wedding, Anna was diagnosed with ALS (amyotrophic lateral sclerosis). At first, her condition did not seem to have a significant impact on their relationship. More recently, however, a painful pattern has developed between them, prompting them to seek help.

Anna tells me about the latest incident that left them feeling distant from one another. She needed help putting on her shoes and asked Leonardo for assistance, but he responded abruptly, saying that they were about to leave and that it was too late to try on new shoes. Anna felt, in her own words, “like a burden because of her disability” and began to complain, accusing Leonardo of being insensitive.

Leonardo, in turn, tried to justify himself, explaining that Anna is never clear about what she asks for. She had not told him that she wanted to try on new shoes; she had simply asked for help putting on her shoes before they left. There was no time to do so, as they were already running late for a scheduled appointment. Leonardo and Anna’s experience reminds us that when a couple is living with disability—whether physical, sensory or acquired—communication involves specific challenges that go far beyond the misunderstandings commonly encountered in relationships.

There are five main communication challenges in this context:

1. The overlapping roles of partner and caregiver

The first challenge arises when one partner takes responsibility for the other’s day-to-day care. In such cases, communication risks becoming narrowly focused on administrative and practical aspects of caregiving, such as therapy schedules, medication and household management, at the expense of the romantic and egalitarian dimension of the relationship.

In Anna and Leonardo’s case, both work and contribute financially to the household. Yet Leonardo pushes Anna’s wheelchair, helps her put on her shoes and, at times, finds himself acting more as a caregiver than as a partner.

2. The under-communication of needs

The second challenge concerns the tendency to communicate needs insufficiently or indirectly. A partner with a disability may avoid expressing dissatisfaction, desires or fears because of an unconscious concern about becoming a “burden”. This is precisely what Anna describes during our session.

Leonardo, too, avoids sharing his fears and exhaustion with Anna, as well as the emotional strain of living with her illness on a daily basis. The problem is that unexpressed needs tend to accumulate, giving rise to resentment or defensive withdrawal, while suppressed emotions find indirect ways of surfacing.

Anna thus enters a spiral of criticism, feeling misunderstood and unloved without clearly telling Leonardo what she needs. Leonardo, for his part, remains silent about his exhaustion because he feels guilty about telling Anna that he is tired and would like to spend a day without having to care for her.

3. Caregiver burnout

The third challenge is what is commonly known as caregiver burnout: the ongoing physical and psychological strain experienced by the caregiving partner can reduce their capacity for empathic listening, leading to minimal communication or periods of emotional withdrawal and exhaustion.

This is what happens to Leonardo. When Anna speaks, he looks away and disengages by scrolling through his phone, appearing to retreat into another world. He explains that he does this because Anna’s complaints leave him mentally exhausted and because constantly feeling inadequate and unable to meet her needs eventually becomes unbearable.

4. Barriers to communicating about intimacy

The fourth challenge concerns barriers to communicating about intimacy. This is a crucial issue in Leonardo and Anna’s relationship. Anna no longer feels desirable and finds it difficult to approach Leonardo. Instead, she interprets his advances as awkward attempts to avoid making her feel “disabled”.

Leonardo, in turn, has stopped initiating intimacy for some time and has found an outlet in other sexual fantasies. It is therefore essential to help them resume talking about sexuality, a subject that has become taboo between them. As a result, both dwell on the issue privately without sharing their feelings and experiences with one another.

5. Adopting a “we perspective”

Finally, the fifth challenge is adopting what is known as a “we perspective”. Research suggests that couples who cope more successfully with the difficulties described above are those who manage to reframe disability as a shared challenge.

Emotionally Focused Therapy also emphasises the importance of helping couples identify the external enemy. In other words, partners stop blaming one another and recognise that they are both trapped in the same negative pattern, which keeps repeating itself in an endless cycle.

Rather than remaining in conflict, they form an alliance, recognising that they both contribute to the relational “dance” that causes them suffering. They come to understand that the enemy is not the partner, but the recurring dance itself.

The way forward, therefore, is to change the paradigm: no longer one against the other, but together against the mechanism that traps them. Together, they can join forces to break this pattern and create a new dance of connection.

Source: www.cittanuova.it – Lucia Coco

© All rights reserved.