As soon as we entered the hospice, Sandra and I both felt comfortable, accepted, respected and celebrated as a lesbian couple (Photo: Clare Beloved)

“She’s my wife, not my girlfriend.”

I can’t remember how many times I’ve had to repeat this to healthcare providers.

On good days, my wife Sandra and I were horrified when people tried too hard to correct themselves and felt guilty about their assumptions.

But when you feel vulnerable and traumatized and faced with the loss of the person you love, you don’t always bother to correct people. Or having the energy to make those who care about you feel better.

In and out of medical facilities for three years, Sandra and I have seen the good, the bad, and the ugly of the system.

We have often done playful TripAdvisor style reviews. Things like “Staff attitude today, solid 4/10 this time” or “Not a warm welcome – definitely a low 3!”

Sandra was first diagnosed with primary breast cancer in 2006. When we met in 2014, everything was clear.

But in 2018 it all came back and she was diagnosed with stage 4 cancer. We got married soon after – a final diagnosis can really clarify what’s important and how short the time is.

In June 2021, after years of difficult treatments, chemotherapy and bad news after bad news, Sandra went to Marie Curie Hospice in Liverpool for help managing her symptoms and pain levels and spent her final months there until she passed away in August 2021 .

Sandra had always begged me not to let her go to hospice. She felt strongly that she wanted to die in the comfort of our own home and not in a hospital or medical facility.

But the first time she came to visit, she completely changed her mind – she felt like she had come home.

As soon as we entered the hospice, Sandra and I both felt comfortable, accepted, respected, and celebrated as a lesbian couple. The hospice looked great, there was a unique homely atmosphere, beautiful gardens with fresh flowers and the staff exuded pure love.

Sandra was very happy to see a rainbow pin on the nurse’s lapel and a rainbow cord around her neck. It reassured her that she didn’t have to question her behavior or attitude and could speak openly about her life, our love and relationship.

Clare’s wife Sandra (Photo: Clare Beloved)

A lifelong activist, Sandra has founded several LGBTQ+ youth groups and helped thousands of people in these communities feel safe and welcome.

It was very important for her to feel at the end of her life that she could be herself.

Unfortunately, that is not the case for everyone.

Often forms for filling in your personal information in healthcare facilities are completely out of date and exclude the non-binary and trans community – in addition to assuming your sexuality based on the heterosexual norm.

Discrimination against LGBTQ+ people is widespread in many healthcare settings – a time when we can feel most vulnerable. This can create barriers to support someone in the way that is appropriate for them when they are part of the LGBTQ+ community and at the end of their life.

Such barriers can include fear of discrimination, fear of not being accepted or respected, and assumptions about their identity that make them reluctant to truly be themselves. A past negative health care experience may mean that a person delays seeking help when they need it or is less likely to share personal information, such as their sexuality, with health care providers, which may limit opportunities for person-centered care. limit.

Lesbian, gay and bisexual people are more likely than heterosexual people to claim to be surrounded by friends at the end of their lives, according to a new study by the charity Marie Curie and Superdrug.

For many in the gay community, our friends are our family and this often goes unrecognized, especially at the end of life. Healthcare facilities often ask who the closest family member is or don’t see friends as the primary source of support – this has been the case for me in the past.

There were times when I called a department and they immediately asked, “Are you related? We can only provide information to next of kin”. And I wanted to say yes I am! I am a chosen family!’ For some people, their friends are their family, so I think the definition should definitely be broadened to include healthcare.

My incredible wife was a mighty and inspiring force in this world and would always fight to bring about systemic change

A myth about terminal illness is that you get a terrible diagnosis and then are free to live your best life. There’s this romanticized idea that you have those good times together, walking along beaches and into the sunset, and then you die.

The reality is often a series of devastating losses and trauma every day after diagnosis. Life can be dominated by scans and weeks of waiting for the next result or treatment in hospitals.

Sandra has dealt with the loss of her beloved job running a social enterprise in Merseyside, the loss of her former identity, her dreams and plans for the future and ultimately the loss of independence and control over her own body and mobility .

At the hospice, people questioned her about her life, recognized what a wonderful person she was, and saw her as more than just a vulnerable patient. That was very important because until her death she was aware of who she was and how inspiring she was. It kept her going, Sandra felt happy. She could leave this world with a sense of being seen and that was very reassuring to me.

It saddens me to think that many people nearing the end of their lives may not feel safe or comfortable enough to fully appear as themselves, and that at such an important time during their journey get the wrong gender and be treated with contempt.

My incredible wife was a mighty and inspiring force in this world and would always fight to bring about systemic change.

Healthcare and social care professionals can and should recognize that people from LGBTQ+ communities may have different needs and desires, and this can be easily achieved with a few small changes – such as having open conversations about who their patients can turn to for support, and include “friends” in health material.

I want everyone to experience a level of care that allows them and their loved ones to feel safe and celebrate the way Sandra and I have become. I will never forget it.