Spinal Cord Injury: Relationships

Today, we talk to Dom, an advocate for people with disabilities who suffered a C 5/6 spinal cord injury, and Dr. Adrienne Epps, Senior Staff Specialist and Head of Rehab2Kids at Sydney Children’s Hospital Randwick, about love and relationships after a spinal cord injury. This type of injury and the changes that come as a result can take a toll on self-confidence. Listen in as Dom tells us about his experience.

For more information on sexuality following spinal cord injury, visit the Agency for Clinical Innovation website.

April 16, 2018

NARRATOR (BECCA): Hi there and welcome to In My Words, Jumo’s podcast series that brings the experiences of real patients directly to you. At Jumo we provide resources for children and families to understand, manage, and own their health.


NARRATOR (KIRSTY): Hi! This is Kirstie back here in Sydney, Australia and for those who haven’t listened to our previous episodes, we’re talking about spinal cord injuries with Dom, an advocate for people with disabilities who suffered a C 5/6 spinal cord injury, and Dr. Adrienne Epps, Senior Staff Specialist and Head of Rehab2Kids at Sydney Children’s Hospital Randwick.

Today’s topic: love and relationships. This can be a tricky topic for anyone! But having to navigate the long and winding roads of love after a spinal cord injury can make things all the more complicated. This type of injury and the changes that come as a result can have a massive toll on self-confidence. Listen in as Dom tells us the story of his love life after his spinal cord injury:

 

DOM: Yeah, in terms of relationships, my spinal cord injuries had a massive effect on my life. So I guess it starts when I first had my accident, I was lucky...looking back, I was lucky enough that I actually was not in a relationship when I had my accident. I had sort of just had one end and then I had my accident. I went to rehab and it was a couple of guys in rehab that were young around 22-23, one of them was engaged with two kids and they actually had their partners cheat on them while they were in rehab. And knowing how hard it was to go through rehab without that sort of worry, I can't imagine how they got through that year in rehab knowing that their partner had cheated on them. Especially when they're engaged. But I was really lucky that that didn't happen to me, but then when I came back to Newcastle and started to live my life and I started going out to pubs and clubs and things with my friends, I started to realise that I didn't actually enjoy going out to pubs and clubs anymore. So it was quite hard to be at pubs and clubs all the time.

So you go out and you sit in the pub, people are bumping into the wheelchair. People who are really drunk are coming up to you and saying, "Oh, it's so good to see you out, mate." And you're like, "Yea, it's good to see you out, too." And it's just not a fun time. It's really loud and to, sort of, hear what people are talking about you got to lean into them and it just hurts your neck and it's hard when you get home you got to get into bed. But the whole experience of going out is just not easy, and then approaching a girl when you're in a wheelchair and you don't have enough confidence regularly let alone being in a wheelchair, to go and approach a girl -that's just incredibly difficult and it's something that I have struggled with a lot. I decided that pubs and clubs probably weren't the place for me to be meeting someone anyway, so I stopped going out to pubs and clubs so much.

I tried dating via eHarmony and things like that which was great for a little while, but I started to find out that when I'd start talking with a girl I'd be like, "Did you see in my profile..." - and probably being a little bit too negative - "Did you see my profile that I am in a wheelchair?" And they'd say, "Oh, no, I didn't say that." And then that might be the end of the conversation sort of thing, they wouldn't write back to me after that. So it's really quite harsh. And I guess I take those sorts of things pretty personally, whereas I should just get over it and think well that's just, you know, them being stupid, and it's not personal.

But then I was lucky enough on eHarmony to find someone who was actually okay with me being in a wheelchair. But then I found the whole - she was in Bathurst and I'm in Newcastle - so that whole situation about long distance was really, really difficult. And also, I think being someone who is in a wheelchair, it's hard to let someone into your life and to know that they're okay with everything when you haven't really met them. You know, you can explain things many times to them but to actually see someone I felt like that was different. It's just really difficult. So after a year or so of back and forth talking and texting and everything we sort of went our separate ways. So that was quite hard. But that's sort of the only real experience I have with relationships post-my injury.

Other than that, I have, I guess, nurses that come into my house twice a day, like I was saying, and it's sometimes difficult to separate that...that...I don't know what you call it. It's hard to separate between the professional relationship and the personal relationship that you might have with someone. Especially when you're young and they're around your age, it's difficult to have them coming in and you get along so well and to not form feelings for someone who's there three or four days a week and they may be the only girl that you interact with in that week. It's really difficult to separate that and say that they're just there, that's their job to be there, they're not there because they really like you. Not that they don't like you, but they're getting paid to be there. They wouldn't volunteer to be there.

I believe we've evolved over the years; we've evolved, I think, to form relationships and to be wanting that loving relationship, and that partner, and to have children, and to grow old together. That's something that I think everyone wants, and to be someone in a wheelchair who is quite young and not have that or not think that you've got any prospect of having that in your life can be quite debilitating and hard, mentally.

So I think if people are in that sort of situation where they think it's not possible or it's not going to happen and it is really getting to them, I think that talking with someone (a professional) about it is a really good way to go and they'll just be able to be that voice of reason within their head and point them in the right direction. And even if they talk with their OT or anyone about possible ways that they could overcome it - I spoke with my OT numerous times about going out and doing a dating scene and things like that, and doing like speed dating and she was going to come along with me, even though she had a partner, she was going to come along with me to speed dating and do that sort of stuff.

But in the end, I just wasn't confident enough to go out and do that sort of thing, which is... you know, when I look at myself I think it's quite stupid because it doesn't help me sitting at home not going out and doing those things. But it is just so hard to actually go out and have the confidence to do that sort of thing. And also, I feel like if someone actually did show some interest in me, it would be hard to take that next step and believe that they were genuinely interested in me, because my self-esteem would be that low that I wouldn't really believe them. I'd feel it was more of a sympathy thing. I don't know, it's quite a hard situation and I think one that people probably ignore a lot. And that I've probably ignored, myself, a lot in the past.


NARRATOR (KIRSTY): As Dom puts it, we have evolved to want a loving relationship and partnership with another person, but he has concerns about getting to that stage with someone due to his self-confidence and the long-term stamina required by someone who is the partner of a quadriplegic.

We’re back with Dr. Epps, you’ll remember her from our previous episodes. Dr. Epps, when it comes to thinking about relationships after a spinal cord injury, what’s important for people to know?


DR. EPPS: Romantic relationships are possible with spinal cord injury. Finding ways to meet people and stay connected helps to provide those kind of opportunities to meet people that you enjoy being with and kind of progress that into a romantic relationship. Staying connected with people is really important. You can get information from your health care team, specialist nurse, consultant doctor, or sexuality counsellor for information.


NARRATOR (KIRSTY): Another concern for people with a spinal cord injury, as well as their partners, is intimate relationships and having children. Is it possible? Are there risks?


DR. EPPS: I guess it's important to know that intimate sexual relationships are possible with spinal cord injury, and females are able to conceive and have successful pregnancy and delivery of healthy infants. So it is possible for males and females to have children, but there are some risks - for example, autonomic dysreflexia - in high-level spinal cord injury, that need to be considered.


NARRATOR (KIRSTY): Autonomic dysreflexia is when someone experiences a sudden onset of excessively high blood pressure.


DR. EPPS: The health care risks need to be addressed depending on the level of the spinal cord injury. There can be emotional challenges, obviously, and feelings of lack of self worth and not feeling very attractive. So talking through that with a counsellor or a psychologist can be really helpful. An occupational therapist can help with practical solutions for the physical challenges of being able to have intimate relationships. The emotional barriers can be really big ones and I think Dom expressed that really well. I think having a psychologist to help talk through that, find ways of feeling more confident in relationship building and sexual experience is possible and important.

There is actually a fabulous resource available on the ACI (that’s the Agency for Clinical Innovation) website on sexuality following spinal cord injury, and that has a lot of guidance and practical information that I would recommend anyone go to for a lot more detailed information about what's possible and where to get help.


NARRATOR (KIRSTY): A link to the resource Dr. Epps mentioned from ACI can be found in the show notes of this episode.

Dom talks about how he was not in a relationship when he experienced his spinal cord injury, but there are many people who do have existing relationships or marriages when this happens. What are the concerns and challenges for an established relationship?


DR. EPPS: So I guess there is a challenge in maintaining existing relationships like marriage or a long term partner. So, a lot of changes for the person with a spinal cord injury and a lot of changes and challenges for the partner, as well. There is certainly a significant risk of that relationship breaking down. I would suggest really being open in communication about that. That's a really important thing to do. Express your feelings. You know, let people know your fears and anxieties about how to move forward with, you know, intimate, physical kind of touching and all of those things that we take for granted otherwise. And get help, because there is good help available out there. Don't just think it's not possible - it's certainly possible to have a really positive and fulfilling relationship with a partner.


NARRATOR (KIRSTY): It seems that one theme is ringing true for this topic, as in our previous discussions: open communication. Don’t be afraid to talk to your partner or loved one about how you’re feeling and the concerns you’re having about your relationship. It’s very possible they have their own thoughts and worries about it, and talking through that can go a very long way. As Dr. Epps mentioned, it can also be very helpful to talk to a professional about these concerns - whether you’re already in a relationship or thinking about one, working through the challenges you’re experiencing in your relationship, or the challenges you foresee down the road, can be very beneficial.

Getting back to Dom, we were curious how his ideas and thinking around relationships have changed. What does a relationship really mean?


DOM: So a relationship to me - it's changed a lot from when I was younger - and for me it's about that intimacy that you have with your partner in that relationship. And it's about feeling, you know, that touch. The only people that touch me now are nurses and it's a completely different sort of touch to the way you touch your partner. It's having that intimacy, and being together, and traveling, and just experiencing.

And having someone there to support you, and to encourage you to do things, and be there with you when you're sitting around on the weekend when you've got nothing to do, they're like, "Do you want to go out?" rather than you just sitting there and watching Netflix. But you know, if they want to do that, that's cool. Or if you're sick, they can look after you or you can look after them. It's all of those little things that you miss that just aren't in your life when you don't have a partner. They're the things that I think you really miss - it's just an intimacy and a closeness and having someone there with you and not feeling alone anymore...yeah.


NARRATOR (KIRSTY): We’d like to thank Dom for sharing his very personal experiences and feelings about relationships, as these concerns and worries are undoubtedly felt by others in similar situations. It may seem impossible to pull off a smooth pickup line from a wheelchair; and it may feel like your relationships will never be the same again. But as we’ve learned from Dr. Epps, these feelings are completely normal, and being open about them and talking through it - whether it is with your loved one or with a professional - is an important part of one’s journey after a spinal cord injury.

As always, thank you to Dr. Epps for her insight, guidance and suggestions. Next time on In My Words, we’ll be focusing on self-care and independence with a spinal cord injury.


NARRATOR (BECCA): Thanks for listening! Interested in hearing something special - or want us to help share your story? Reach out to us, we’d love to hear from you! See you next time!

The health information contained in this Podcast is provided for educational purposes only and is not intended to replace discussions with a health care provider.

In My Words is produced in New York City and distributed worldwide.

In My Words - A Jumo production.

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