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Being In An Interabled Relationship: Q&A With My Caregiving Boyfriend

I have Limb Girdle Muscular Dystrophy, a progressive muscle wasting condition which mainly affects my arms and legs. This means I can’t lift my arms, have zero strength, no trunk control and unable to walk. I use a powered wheelchair and require the support of carers for most aspects of my daily life.

My disability not only affects me, but it also affects those closest to me. This being my partner and Mum who are my main carers. I recently shared my parents perspective on caring for a disabled child. Now I want to share the perspective of the person closest to me, my partner of fifteen years.

In this post, I ask Allan to answer questions on what it’s like being in an “interabled relationship” and being my main carer.

“Interabled relationship” is a term used to describe a relationship between a disabled person and a non-disabled person.

Personally, this isn’t a term I would typically use to describe my relationship with my partner. We are simply in a relationship. We may have more challenges to overcome and things may take us a little longer to do, but we do all the things that non-disabled people in relationships do.

What’s it like being in an ‘interabled relationship’?

Before we get into the nitty-gritty, you may want to know the background story on how we met, which you can read about here – Disability, Sex & Dating As A Wheelchair User.

Emma in her powered wheelchair with her boyfriend kneeling beside her holding a phone up while taking a selfie of them together. Emma is giving him a kiss on the cheek. They are outside a Cathedral in Edinburgh.

1. Did you know anyone with a disability or have previous experience caring for a loved one before meeting me?

Yes, my Mum has epilepsy and so growing up I have dealt with the ups and downs of this. I have also cared for her after several operations she has gone through in the past. Naturally, I have always been a caring person I would say.

2. When we first met and began dating, did you have any concerns or worries about what caring for me would involve?

No, it never entered my head what care you would need. I guess that type of thing took a back seat to your personality and the fun we were having dating and being together.

3. What, if any, has been the biggest challenge for you in terms of being in a relationship and caring for me due to my muscle wasting condition, Muscular Dystrophy?

Every relationship has its challenges and takes work to keep them happy and healthy, but when you add in a disability you then blur the lines as you become both partner and carer to the one you love and this is not always easy.

In terms of challenges, I wouldn’t say there were any major challenges as we have just taken things as they come. Naturally, your disability presents challenges all the time in terms of wanting to do certain things, go to certain places etc. I would say I am naturally a compassionate and understanding person anyway, but I have had to work on becoming much more patient over the years.

You definitely need to be committed to being a carer and partner all in one. You need to laugh, a lot! It can be testing. Making every single drink and meal for fifteen years, doing the washing, cooking, cleaning and everything else as well as all personal care for the one you love 24/7 is tough and takes its toll.

Having a great sense of humour makes it easier and we laugh so much that it does lighten things up and keeps it fun.

When it comes down to it, being a carer and partner all in one gives us a bond that is stronger than any other. We think the same, finish each other’s sentences, come out with the same question to each other on many occasions. It’s hard to explain, the bond is just so close.

4. Do you feel like you have changed since being a carer? Attitude or perceptions?

I have always been the type of person who would help anyone in need and never judge people. I think I am just more aware of disability issues due to being with someone with a disability. For example, it’s that old thing of people not really bothering to notice if there is a ramp until they or someone connected to them have a disability, then it matters and they can empathise.

5. What have you learned from being in a ‘interabled relationship’ and caring for me?

I have learned that life is short and so we must do what makes us happy.

6. What is the hardest part of being a carer?

Seeing your daily struggles and knowing the things you would like to do but cannot do is always hard. Even though I am used to it, it never gets easier.

7. What is the best thing about being a carer for me?

Knowing that I can make some things easier for you. Oh, and also the queue jumping, free gig tickets etc haha. Most importantly the very unique and close bond we have.

8. Do you feel like we miss out on anything compared to non-disabled couples?

We do, and non-disabled couples take things for granted. We miss out on so much of the outdoors, which we both love. Things like going to the beach (easier now we have a beach wheelchair), climbing mountains (something I love doing and would love to experience with you) as well as doing very simple things can mean lots of planning, which in the end sometimes is not worth it and often not possible.

9. What is the one biggest misconception people have about ‘interabled couples’?

There are many but people being people, most I find are not open-minded and so judge very quickly without any knowledge of what they are judging. A few of the main ones would be that disabled people can’t have sex so there must be no sex life or that it can’t possibly be exciting. Yeah okay then! You’d be surprised is all I’ll say.

Another is that I must be your brother, carer, friend etc. Wrong again! That it won’t last and why would a non-disabled person want to be with someone disabled. Well, it’s lasted fifteen years now and most likely have fewer issues and are stronger than most non-disabled peoples relationships.

10. What do you want people to know about caring for a partner?

I want people to know that it is emotionally and physically tough. It’s essentially a 24/7 job that goes with you everywhere you go even out with your relationship. The worry about those you care for is always there. Even when I am not with you, I worry that you are okay and always have to make sure someone is there for you or that you aren’t left on your own too long.

It’s not at all like caring for your sick mother, son, brother, sister, daughter, father etc. Being a carer and in a loving romantic relationship at the same time is something only those who are in it will understand. It’s complex, bloody hard yet beautiful all at the same time.

11. What advice would you give to others like yourself, who are already in or beginning stages of an ‘interabled relationship’ with caring responsibilities?

Be kind to each other. Take a step back and understand where the other person is coming from and learn to laugh at things, at yourself, at those staring or being ignorant. Just have fun. We only live once.

Emma and her boyfriend walking through Princes Street Gardens. They are both smiling at each other.I hope this Q&A with my boyfriend has given an insight into what it’s like being in a relationship with someone with a disability. As well as the thoughts and feelings on caring for a disabled partner with Muscular Dystrophy.

And hopefully, it shatters some misconceptions people may have about ‘interabled couples’ and disabled dating.

I also hope this has possibly helped in some way if you are currently new to dating with a disability or have some concerns either as the disabled person needing care support or the partner providing the care support.

Thank you to Allan for answering these questions and being so open and honest about what it’s really like being in an ‘interabled relationship’ as well as being a carer. I know I’m hard work and even though I may not always show it, I appreciate everything you do for me.

Are you or someone you know in an interabled relationship? In your experience, what are some of the misunderstandings people have about interabled couples? What impact has your disability or your partners disability had on your relationship? I would love to hear your thoughts and experiences.

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Being In An Interabled Relationship

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You might also like:

Parenting A Child With Muscular Dystrophy | Q&A With My Parents
5 Things I Do Differently Living With Muscular Dystrophy
10 Awesome Perks of Being In A Wheelchair
My Identity And How My Disability Defines Me

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Meet Emma

Hello I’m Emma. My mission is to show you the possibilities of accessible travel through my travel guides, tips and reviews. I also share personal stories, live event reviews and more.

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9 Responses

  1. Love it!! We will be posting about my husband, Gary’s perspective too. He has a very similar attitude to Allan – LGMD or not – we are lucky gals I think 🙂

    1. Hi Leanne. Thank you so much for your comment! I would love to read Gary’s perspective 🙂 I’ll be keeping an eye out for that post. Thanks again! Have a great weekend!

  2. Thanks Allan and Emma.

    On my way out the door, I feel just a just bit more confident after reading this post and the older one you linked too.

    1. That’s brilliant – thank you for letting me know Declan. I’m super pleased this post has made you feel more confident 🙂 Thank you!

  3. I’ve just shown this to Andrew, my partner – of 44 years! – and he said ‘That’s exactly like us, isn’t it?’ Thanks so much for sharing this post, Emma. As Allan says, only someone in the same situation will understand. It’s so important for the partner who puts their own life aside to some degree to enable us to live ours more fully to know that there are others out there who are doing the same thing. And – despite the frustrations, difficulties and sadnesses of our way of living – the wonderful closeness of the bond is beyond anything people not in our situation can experience, I think. Like you, we seem to be part of each other, both physically and mentally. Occasionally, when I’m watching Andrew doing something, I feel physically in my body when he makes a movement I’m not expecting! I seem to expect to be able to control his movements with my mind – sounds weird, but I just think it’s part of this blurring of lines. I don’t think Andrew is too keen, though!

    1. Thank you so much for your lovely comment Hazel. I appreciate you sharing your story too. I’m so happy to have shared this post and hope it may help someone in a similar situation. It’s great to know that you and your partner have an incredible closeness and bond too. It is amazing to know that. Thank you again for sharing your story and I hope you both have a great weekend.

  4. Your partner is clearly a man who FEELS GOOD ABOUT HIMSELF, completely separate from his relationship with you. He no doubt finds you an amazing and inspiring woman.

  5. I have limb-girdle too, i like your way of thinking also you’re such a great couple guys! I just wish someday i’ll find someone who will love and care about me unconditionally, also m touched by the way it hurts him thinking about what you want to do and can’t, god bless you guys and i wish you the best ❤️

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