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 thirteen 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.
Last week was Carers Week so I thought it was a great time to share this Q&A with my caregiving boyfriend. Carers week is dedicated to all the amazing people out there providing care and support for those who need it. It raises awareness of caring, provides support to carers and highlights the challenges of caring, especially for unpaid carers.
Carers make an incredible difference to so many peoples lives, mine included and I know I’d be lost without the care and support of my family who provides my everyday care. In the past, I have had care agencies as well as employing my own PA’s.
Before we get into the nitty-gritty, you may want to know the background story on how we met, which you can read all about here – Disability, Sex & Dating As A Wheelchair User.
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. I have always been a natural caring type of 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 with 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 and totally dedicated 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 thirteen 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 personally 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 myself. It’s that old thing of people not really bothering to notice if there is a ramp for example 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 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. As an interabled couple, do you feel like we miss out on anything compared to able-bodied couples?
We do, and able-bodied couples take everything for granted. We miss out on so much of the outdoors, which we both love. Things like going to the beach, 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 there is 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 an able-bodied person want to be with someone disabled. Well, it’s lasted thirteen years now and most likely have fewer issues and are stronger than most able-bodied 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.
I hope this Q&A with my caregiving boyfriend has given an insight into what it’s like being in an interabled relationship, thoughts and feelings on caring for a disabled partner with Muscular Dystrophy and hopefully 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 disabled dating and have some concerns either as the disabled person needing care support or the partner providing the care support.
If you have any questions, please leave a comment below or you can send me an email if you’d prefer to chat privately.
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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My Identity And How My Disability Defines Me