What does it mean to commit to someone "in sickness and in health"? And is it possible to keep the romance alive when one partner cares for the other?
In this article we look at how neurological illness can affect relationships, and offer information on where you can find help and support.
Neurological conditions can have a huge effect on our mood, personality, abilities and needs - so it's not surprising that they will also affect our relationships. Here are some examples of how some couples deal with neurological conditions.
She's my eyes and ears
"My fantastic partner Lindsey is a tower of strength to me," says Gavin Burden, who has been visually impaired since undergoing an operation to remove a benign brain tumour in 1996.
"As I only have 25% vision, she's my eyes and ears. I've always been very self sufficient and I don't want to be reliant on anyone, but there are things, like driving, that I can't do. But then it works both ways, like any relationship - there are things that I help her with, too."
He allows me to breathe
Sandie Bailes was treated for a brain tumour, and was later diagnosed with MS. She feels lucky to have her husband, Arf, and says that "everyone should have an Arf"!
"Having Arf with me during the most stressful time ever was like having a quiet cuddle," says Sandie. "He made my days normal through all the trauma; he’s never not wanted to be with me, despite both our lives changing drastically. I can’t bear to think of life without him; I wouldn’t be Sandie! He allows me to breathe. Without him, I may well have ended up in a care home as I have no immediate family."
But while many relationships do survive the trauma of a serious illness, with some couples finding that they are closer than ever, others can be put under pressure. For Ben Hay, who was diagnosed with an unruptured brain aneurysm, it was the psychological impact that had the biggest effect.
"I was in a four year relationship when I was diagnosed," says Ben. "At first she was quite blasé about the whole thing and slowly she started to distance herself from me. We would see less and less of each other, and as I was going through a bit of a crisis I clung on and made the whole situation a little bit worse."
"Finally, we split up, and it wasn't until a few months later that we met up and discussed what had happened. She had as a young girl lost a close relative to cancer, and I she said my situation just brought up all the old memories."
But the end of a relationship doesn't have to be negative: "Sometimes I'm a little bit angry, but you move on with your life and you meet new people," says Ben. "I don't blame her at all for how she felt; often we can't help how we feel, and looking back in a way it was easier alone."
Adjusting to change
While not all couples will split up, it can take a while for both partners to adjust to the changes caused by neurological illness. These can include changes in personality, ability and attitude.
Jayne Potter's husband Clifford had a bleed on the brain, which has changed his life in many ways.
"Clifford finds it difficult to get motivated now, whereas in the past he would get up, go out to work all day, come home and work for himself in the evenings and at the weekends," says Jayne.
"I find this very difficult to cope with as he was a workaholic and he has gone to the other extreme now, where I have to try and get him interested in work and the house."
The practical side
Neurological problems can force couples to change who does what within the relationship.
"On a practical note, Arf tends to be in charge of the cooking and ironing; we also have a "Mrs Poppins" who helps us round the house courtesy of my Care Budget," says Sandie Bailes.
"Arf also helps me with dressing and bathing. I try to be as independent as I can be but if I use all my energy dressing etc, I have none left to enjoy the rest of the morning."
Keeping some independence is important to Sandie, and their relationship remains as equal as it can be. "We share decisions as we always have," she says.
Working as a team
Jayne Potter has found that following his bleed, Clifford has a different attitude to the finances - which is not altogether a bad thing:
"Before his bleed, Clifford was quite a private person where money was concerned," she says. "He hid all the paperwork, insurance, payment protection certificates, car stuff, passport and his driving licence and would never say where it was as he was afraid someone could break in and steal his identity."
"Now that Clifford is out of hospital, he is a changed person. He says he has been given another chance in life, and he says you can’t take your money with you."
In this case, change has been good for the couple: "Now I have control over all the money and we manage to pay everything and still have a little bit of a social life so that’s all good," says Jayne. "Whenever Clifford gets any letters he shows me straight away and we put them away together. I think we work more as a team these days, which we never used to do."
Something different to focus on
For some of us, having something outside our illness to think about - whether that's the wellbeing of a loved one, or perhaps an interesting hobby, can stop us from focusing too hard on our own problems, and help us relate better to others.
Gavin Burden and his partner Lindsey first met in 2007, when Gavin was already partially sighted. They have a daughter, Maisy, and a son, Frankie, and got married in 2010.
"It's been brilliant," says Gavin. "It took about 5 years for me to go a day without thinking about my condition, but now I've got something different to focus on."
Keeping romance alive
But can a relationship keep the romance alive when one partner becomes the other's carer? For Sandie Bailes, it's important to see "husband" and "carer" as two separate roles. "I need his help when we're out – to go to the loo as my balance is rubbish. When this happens, he becomes my carer, as he does when doing anything personal for me. Then he changes back to being my hubby! It’s important to see and realise the difference."
Perhaps another key part of maintaining a good relationship is to adapt to change and find new ways of doing things if need be. "We used to love trekking and walking; now we still go for a stroll with me in my beefy scooter," says Sandie. "And we still hold hands!"
Sexual dysfunction in neurological conditions
Sexuality is an important part of people’s identity but it is also very personal, and so when problems occur it is often difficult for people to discuss them. Many people experience sexual problems at some stage in their lives. However, people with a neurological condition may find that sexual dysfunction occurs more often. It is important to understand and know your own body, and also to express your feelings and needs to your partner.
Sometimes, people who are single when they are diagnosed with a neurological condition can also be concerned about their future ability to attract a partner.
Sexual dysfunction symptoms may include one or more of the below:
- decreased libido
- erectile dysfunction (ED) for men
- ejaculation problems for men
- altered genital sensation ( i.e. dryness for women)
- pain during sex
It should be noted that a decrease in sex drive is normal with age and can vary from person to person. Even if you have a neurological condition, any change in sexual activity may not necessarily be related. Some medications can also affect sex drive or sexual activity, particularly blood pressure medications or anti-depressants.
Erectile dysfunction (ED) is one of the most common sexual problems and can affect quality of life significantly. Erectile dysfunction is when a man lacks the ability to get an erection of sufficient quality for sexual activity. In relation to neurological conditions, this could be due to both the reduced nerve sensations and the anxiety caused by the neurological problems that the person is experiencing.
Erectile dysfunction is commonly treated with medication that regulates the blood flow to the penis, allowing for erections to occur with usual sexual stimulation. Medication side effects and whether this is the right course of action for you should be discussed with your doctor or specialist nurse. Other treatment options and therapeutic approaches include:
- sexual counselling
- phosphodiesterase type 5 inhibitors (PDE5Is)
- medicated urethral system for erections (Alprostadil pellets)
- intracavernosal injections
- vacuum devices
- talking to your partner
It is important to discuss with your specialist nurse, consultant or GP the problems you are experiencing, and to explore which option is most suitable for you and any possible side effects.
Women may experience sexual dysfunction due to both psychological (mental) and physiological (bodily) problems that may be difficult to separate. Many women find it difficult to adapt to a chronic or a progressive illness. Physiological causes of sexual dysfunction in neurological disease may include hormonal changes.
Approaches and treatments that women may find helpful include:
- sexual counselling
- alpha-blockers or phosphodiesterase-5 inhibitors
- lubricants and oestrogen therapy
- use of sex toys which may stimulate the nerve endings (some women find this method helpful as they have more control and can build up their confidence so that they are more able to relax into sex with their partner)
- talking to your partner
Some women may be concerned that their neurological condition or sexual dysfunction may prevent them from getting pregnant or that it may not be safe to do so. If you have concerns about getting pregnant, speak to your GP or consultant about the options you have and find the right one for you.
For the partner without a neurological condition
If you have had to take on the role of carer since the onset your partner’s condition, it can be difficult for both you and your partner to understand, accept and adapt to this new dynamic in your relationship. Some couples may be able to adjust to this new reality more easily than others.
You may feel that your partner is being withdrawn or unresponsive. It is important to give them time and to understand that their condition may be playing a part in any personality or behavioural changes.
You should try to be open and honest with your partner about your feelings and any concerns you have. Equally, it is important that you ask your partner about their wants and needs and whether they also have any worries. Good communication is vital for a healthy relationship.
Related links and sources of support
Carers UK has information on caring for your spouse or partner. You can also get support from the Carers UK Advice Line.
Relate provides relationship counselling and support services, delivered at 400 locations, by phone and online.
Chest, Heart & Stroke Scotland has information on roles and relationships following a stroke. They also have an advice line - 0808 801 0899 - open Mon-Fri, 9.30 - 4.
The Spinal Injuries Association offers a telephone counselling service, peer support and a library which includes information on sex and relationships for spinal cord injured people.
If you would like any specific information on a particular neurological condition, or just want to chat to one of our Helpline staff, call the Brain and Spine Helpline free on 0808 808 1000 - or you can email us at firstname.lastname@example.org.