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Pam – “Try to articulate what you need from your partner and be as clear and concise as possible”

When my now husband and I first met, we were practically babies. We were both 20 years old (over 40 years ago) and caught up in the excitement of a special kind of intense love for one another, a powerful draw that was palpable. At the time, we both lived away from our homes, having escaped untidy childhoods stemming from our unique family circumstances. I may have mentioned to him in those early days that I had twin autistic brothers but the reality of the statement would have had no relevance to my then boyfriend. We were, in effect, ‘grief buddies’ for each other. Although we did not have the words to describe our feelings, we each were sad human beings, hiding behind clown masks. He – through witnessing constant fighting between his parents that eventually ended in divorce. Me – as the ‘normal’ sibling of two non-verbal brothers with severe autism. So while when we met no one in our immediate families had died, our common bond was an unacknowledged neediness to be cared for, looked after, to be held foremost in the eyes of another, that our characters, our humanity, and our interests, were acknowledged and appreciated. That connection nurtured us as individuals and when we decided to become a team, it helped us to conquer our future together.

The first meeting of my then boyfriend with my brothers was uneventful. He did not wince, but instead was accepting of my disabled brothers as two human beings who occupy the planet. He has continually supported my efforts over the years to make changes for the betterment of my brothers’ lives.

This commitment, held together by a type of grief, has not meant that our relationship was always smooth sailing. Our individual need to be recognised by the other often led to conflict. Whose personal needs should take precedent? And, as two individuals not used to articulating those needs, suspicions, acquisitions, mistrust and the goal to move through life as a team dissipated. We separated for seven years.

We are back together now. What keeps us together? A shared history and understanding of each other’s childhoods, greater respect for how far we have come as individuals. And the knowledge that there are no guarantees in life and so we must create our own destiny, as individuals, and, if we are to remain a couple, as a team.

The only advice I might give another sibling who is looking for a partner is to consider the wider picture. If you are the ‘crusader’ type, actively caring for and advocating on behalf of your disabled brother or sister, don’t expect a love interest to join in. If this describes you, your love interest may be inspired by your activism and join you but it is your battle and not theirs. Try to articulate what you need from this person and be as clear and concise as possible. “I need a hug right now”, “Could you make a quick phone call for me to check up on Joe’s progress at the hospital”, small gestures that can reap enormous benefits for you. Try to figure out what these gestures might be.

To non-sibling partners on how to support your sibling other half –communication is not always the key. Paradoxically, sometimes the best response to a sibling is not to say anything. It is your job to understand the times when prodding can be tolerated by the sibling, and when it is best to wait and see how the situation matures. What drew you to your sibling partner is their immeasurable sensitivity to others. Keep this thought in check and try not to abuse this tendency and ask your sibling other what they need. And do it!

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