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Lisa – “We know neither of us is a mind-reader, so the easiest way to work on things is to speak to each other about how we’re feeling.”

My partner and I met through a dating app in my early 30s. We did our own thing after the first couple of dates, then came back together the next year.  We lived apart in different cities in the UK for the first 2.5 years. We took our time in building a relationship. Our lives were already full with family, fun, career and travel, and we weren’t thinking long term initially.

As part of our first conversations discussing families, I told him that my sister has Down’s Syndrome. Because we were living in different cities from each other and our families, it took a few months before they met. Throughout that time, we discussed all aspects of both our families and were familiar with each other’s situations. My sister and partner first met with other family members around, so it wasn’t so focused on just the two of them. I’m quite protective of my sister and would have explained her likes/dislikes, in expectation that he would be sympathetic to them.

We navigate the sibling situation with an understanding that there is love behind whatever is said/done and that mistakes are human.  Sometimes I need an ear just to listen. Sometimes I want to hear his point of view. Sometimes I don’t want to hear his opinion, but it helps my thinking if he does. Sometimes he needs to not hear all my thoughts. There have been times we’ve disagreed with the approach and have argued or got upset. We discuss why that’s happened and try again.

What keeps us together is that we choose and want to.  In the past, I’ve chosen to be single and wanted to be. I’ve been learning to think more about my own needs and that now includes making space for a long-term romantic relationship. It is important to me that my partner acts respectfully to my family situation. I think it helps that he is very family focused too. We know neither of us is a mind-reader, so the easiest way to work on things is to speak to each other about how we’re feeling.

My advice would be to

  1. Know yourself first. Be kind to yourself, realistic and patient. Read articles about healthy relationships for advice if you don’t have role models.
  2. Share your family situation straight away, at a high level. You don’t need to explain the details or all the history and complications in the early stages Encourage them to be curious and ask questions.
  3. Understand their experiences with disabled people and attitudes towards disabilities.

I have 3 pieces of advice for partners.

  1. Be curious about your partner’s behaviours holistically. Sometimes I react in certain ways because of my lived experiences even if it doesn’t seem to be in an obvious sibling situation.
  2. Be brave and share your views, sometimes that helps improve things by having another perspective.
  3. Be prepared for big emotions and know it’s not likely to be about you personally.

Would you like to help other siblings by sharing your own story? Please get in touch.