Living with MS
It is important to realise that you are the same person you were before your MS diagnosis, it is not a label and it is something that shouldn’t define your life. However, it might take a little time for you and the people you surround yourself with to come to terms with how MS may affect both you and them.
Family and relationships
The relationships we have with people around us, be they be partners, family, friends or colleagues are important to both our emotional health and self esteem and it may seem hard at times to separate yourself from the role you play and your diagnosis, but by focussing on you, the individual and not the MS relationships can stay balanced and may even be enhanced.
There is lots of support available that will help you to tell people in your life, especially children about MS. Children may be scared about what has been happening to you and what it means for the future, being able to share facts in an appropriate way can help to reduce anxiety.
Not everyone will know how to respond to your diagnosis so it is important that you keep talking and listening to them to be able to help them, and for you come to terms with how your diagnosis may affect them.
MS can affect how you feel about yourself and your body, which can have an impact on your partner, or your partner may be afraid of doing or saying the wrong thing to you. You may both find it embarrassing to talk about sex or intimacy and it is common for libido to be reduced in MS. If you are single you might be worried about how you are going meet and tell a new partner. Knowing where to look for advice and support is important,your MS team can help you and you might find relationship counselling helpful in order to move forwards.
It is likely that you are of an age where you are still working and are wondering what a diagnosis of MS might mean for your working life. Due to the fluctuating nature of the symptoms and relapses of MS it can be a bit of a challenge, but many people find that no changes need to be made, others may need to make small adjustments in order to benefit whilst some find that they are unable to continue with what they were doing. With the right support in place, you should be able to remain in work as long as you want to.
Talking to your employers is obviously an important step and it might be that you choose not to do so if your MS isn’t presenting as an issue, however if you drive as part of your job or are in the armed forces you may have an obligation to let them know.
It may be that by making reasonable adjustments, such as flexible or reduced working hours, working from home, or even a chair to sit on would make a difference. The Equality Act gives you the right to ask for them. Your company may already have a long-term health condition or disability policies in place so it is worth finding out what they have already made allowances for.
Any decision about telling your colleagues has to be made by you and your employer must handle this sensitively if you chose not to tell them, however it might help your colleagues to educate them as to how small changes in your working day help you to be more efficient and manage your condition and will help them understand why they might be asked to do extra work if you are not able to do so or are able to work during a relapse, for example.
Having MS shouldn’t be a barrier to you going on holiday and enjoying yourself, in fact getting away from daily routine and doing something new can be really good for your wellbeing! Depending on the severity of your condition the complications of going away could just mean making sure you have enough medications to take with you, or it could be checking that hotel you choose has the right access and facilities for your requirements.
Different countries have different regulations about medications that can be brought into the country so make sure that you check the rules before you travel, even if you are just passing through.
If flying keep medications in their original packaging and take a copy of your prescription, some airlines suggest that you keep medications in your hand luggage.
Having vaccinations shouldn’t be a problem, but your doctor may advise you delay having them if you are in the middle of a relapse. Make sure your doctor is aware of all the medications you are taking as some ‘live’ vaccinations may put you at greater risk of developing the disease.
Check the fine print with any travel insurance, especially if you use mobility aids or specialist equipment, as they may not be covered with a standard policy.