Multiple sclerosis (MS) can affect personal relationships in many ways, and can feel like a barrier to developing and maintaining connections with other people, including friends, family, partners and work colleagues.
By focusing on the individual person, and not the MS, relationships can be preserved and enhanced.
Our relationships with the people around us, whether family, friends, partners or work colleagues, are important for our emotional health and practical support. Our personal esteem and sense of self can often revolve around the roles we play in life, and how we feel we are doing in those roles.
MS can feel like a barrier to those relationships, making it harder to maintain the ones that matter to us or develop new ones in the future. It might be you or someone else with the MS diagnosis, but either way, it may take some time to work out how things have changed for you both, and what you can do to keep your relationship solid.
You may be surprised to find that little has changed in reality. You are the same person after an MS diagnosis as you were before. Everyone has challenges in their life, and MS is not the whole story about who you are.
Parenting and MS
Helena Jidborg Alexander is the Information Content Participation Officer at the MS Trust. She talks about her own experiences juggling MS with being a mum to Tycho, 7, and Huxley, 3.
Telling people about your MS
When you have been diagnosed with MS, you will need to decide about how to tell people about it. Think about who you want to tell about your diagnosis, when to tell them and how much to tell them. There may also be some people that you are obliged to tell, such as the DVLA.
Multiple sclerosis affects the whole family but finding the right way to discuss the changes that MS brings with children can be difficult. We have several resources to help you explain what MS means and to help young people affected by MS realise that they are not alone in the feelings that they may be experiencing.
Children and teenagers with MS may also want help explaining MS to their peers, teachers and friends. If it is a parent or relative with MS, then children might have been worried or scared about the future. You may have noticed an impact on their behaviour or school results. Sharing the facts in an appropriate way can help to reduce their anxiety.
Be ready for people to react to your news in different ways, and perhaps not how you would have expected. They may be shocked, surprised, sad or angry on your behalf. They may already have been wondering what was up, and be relieved that there is an answer. Workmates may wonder if you are still going to be able to do your job, and what that means for them.
People often worry about saying the wrong thing in stressful situations, and avoid saying anything at all. You might still be getting used to having a diagnosis, and the conversation could be uncomfortable or painful. Be ready to keep listening and keep talking things over.
Whether it is you or your partner who has the condition, MS can affect how you feel about yourself, how you relate to your partner and how you feel about sex and intimacy. MS can cause sexual difficulties for both men and women. You may find it awkward or embarrassing to talk about sex, but there is support available from your MS team.
You may wish to seek counselling as a couple, and think about ways you can maintain intimacy in your relationship. Relate counsellor Catherine Allen wrote some valuable advice for relationships for our newsletter.
If you do not have a partner, dating with MS can be daunting. You may worry about whether having MS will put people off developing a relationship with you, or make it hard for you to meet new people. Online dating gives you some control over talking to new people and when to introduce the subject of MS.
Supporting people with MS
If you have a friend, family member or work colleague who has been recently diagnosed with MS, you might be wondering what multiple sclerosis is and what you can do to help. You can find out more about MS in general through the MS Trust website and enquiry service, but it's also vital to listen to the person affected.
MS is highly variable, and the person with MS will know most about how they feel and what would help them. They may want no fuss made and to carry on as normal, or to highlight the help they need. Even if you have experience of other people with MS, you can't assume that you know what the experience of MS is going to be like for someone else.
Be cautious about sharing news of miracle cures. New drugs and treatments can take years to become available and there's also a lot of unproven hype out there. You probably have the desire to help as much as you can, but it's best to leave the medical side to your friend and their MS team. However there are likely to be times ahead when your friend with MS may want your practical or emotional support, or just need a friendly ear.
If a member of your family is diagnosed with MS, you may find yourself providing a lot of help and support with the aspects of life that they cannot manage alone. Being a carer can take up a significant amount of time as well as being physically and mentally demanding. You may not know anyone else who plays a similar supporting role and may not think of yourself as a carer.
It can be important to get the right support for yourself as well as assisting the person you care for to access all the support they need. We have resources for carers, including links for government support, peer support and ways to keep yourself healthy and well.
Information for carers
Find out what help and sources of support are there for family members or friends caring for someone with MS.
Talking with children and teenagers
As a parent, you may consider how and when you talk about MS with your family. We have put together some ideas to help you talk to your children.
Facts about MS
An introduction to what MS is, how common it is and some of the facts and misunderstandings surrounding the condition.
"When you lose something, it makes you appreciate what you have"
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.