Relationships and intimacy

This information is for anyone with axial spondyloarthritis, including people with ankylosing spondylitis

Axial SpA impacts each person in a different way and many people find their condition doesn’t impact their personal relationships at all. However, we do hear from lots of people who would like advice on dating, relationships, intimacy and where to find further support. Generally, it’s a topic that people don’t feel comfortable about discussing publicly, so we’ve put together our best advice from the community.

Communication

When you’re dating someone, it can be difficult to know when to disclose to a new person that you have a long-term condition. This is a very personal decision and will depend on how your axial SpA affects you and how comfortable you are sharing with this person.

You don’t owe anyone any information about your health or your axial SpA, but we’ve put together some tips that can be helpful when discussing your condition with someone new or with a long-term partner:

• Have the conversation when you feel ready, not when you feel under pressure
• Consider giving small pieces of information gradually over time, rather than having a big ‘talk’
• Give the person our guide to axial SpA or signpost to our website, so they can learn more about the condition
• Try to talk about your axial SpA at a time when you’re not flaring or fatigued
• Agree with your partner when to have the conversation, so it’s not ‘out of the blue’
• Use “I” phrases to explain how you feel, to reduce feelings of confrontation
• Write down a few key things you would like to share, for example, if there’s anything you would find helpful from the other person

Ultimately, it’s all about getting to know each other at a pace you’re both comfortable with and good communication from early in a relationship is valuable going forwards, regardless of whether someone has a long-term condition or not.

Intimacy and sex

The difference between intimacy and sex: intimacy is an emotional state that brings feelings of connectedness and caring, whereas sex is the physical act. We’ve heard from members of the community who find their axial SpA can affect their levels of intimacy with their partner in a number of ways, for example:

• Pain levels
• Joint stiffness
• Fatigue
• Flare
• Low mood
• Low self-esteem
• Medications that affect libido

Here are some practical tips that may be worth considering:

• When your axial SpA is flaring, find other ways to connect and be intimate, for example hand holding, kissing, a gentle massage, cuddling
• Keep it light-hearted and use humour
• Sometimes partners are worried about making their partner’s pain and fatigue worse, so it can be helpful to talk with each other about how you’re both feeling
• Do some relaxing activities together, for example a warm bath, relaxation or breathing techniques, meditation or mindfulness

The usual advice for pacing activities to manage pain and fatigue apply for all activities – including sex. It may not seem fun or spontaneous but planning ahead can help you limit the impact on your pain or energy levels, and can perhaps build anticipation too. Some things to consider:

• When does your pain and joint stiffness feel at its best or worse? If your joints feel at their worst in the morning, then perhaps plan for something in the afternoon when you’ve been able to loosen up beforehand
• Plan for a time when you can rest afterwards or don’t have a busy day the day after
• Warm up your muscles in a hot bath beforehand or have a soak after
• Speak to your doctor about pain medication you could take before or afterwards

Some more practical tips:

• Consider different positions – some positions are more likely to protect painful joints. You want to reduce over stretching and changing position can help rest areas of your body that are prone to pain
• Talk to your partner about the possibility of different sex acts or using sex aids/toys (although if you’re immunosuppressed, it’s important to ensure toys are well cleaned)
• Use cushions to support you
• Use a water-based lubricant
• Communicate with each other – both what is uncomfortable and what feels good

Some medications can cause side effects, such as low libido, erectile dysfunction or vaginal dryness. It’s important to speak to your GP or rheumatologist if you’re experiencing any of these.

Body image

It’s important to look after yourself emotionally and promote good feelings of self-worth. It’s natural that our bodies change over time but living with axial SpA can cause other changes for some people, such as changes to your posture, the need to use mobility aids and sometimes using joint braces.

It’s natural that it can take time to adjust to these changes but remember that you’re not alone. If you need support with your emotional wellbeing, it can be helpful to speak to your GP, access counselling or perhaps join a support group.

Advice and support

We know these conversations can be difficult to have, but if your axial SpA is having an impact on your relationships and intimacy, it’s important to reach out to your healthcare team for support and specialist advice. This may include your:

• Rheumatologist
• Rheumatology physiotherapist
• Occupational therapist
• GP
• Gynaecologist
• Counsellor/therapist

For advice and support for LGBTQ+, we recommend Stonewall and Mermaids.

We have more information about supporting your emotional wellbeing and remember you can meet other people with axial SpA at your local NASS branch for social events. If you don’t have a local branch, do get in touch as some branches are holding online events. NASS members can also reach out to our active community on the members forum.