Did anything change after you were diagnosed with MS?
Making Sense of MS: In this short film we ask people what, if anything, changed after they were diagnosed with multiple sclerosis.
What are life choices?
How does a diagnosis of MS affect the choices you make about your life, future and goals? Here are some ideas for when you are making life choices after diagnosis with MS.
You may be worried that MS is going to make a difference to your path in life and affect the choices that you have.
Life choices can be the big decisions in your life, like whether to get married or move house. There are also many day to day life choices such as how much you exercise and who you have as your friends. All of these choices add up to set your overall direction in life.
Making life choices is an ongoing process for everyone. We may think we know where we're going in life but then something (or someone) comes along to make us reconsider. It may be a welcome wake up call that prompts us to get out of a rut. It could be a surprise that throws us off course, at least for the time being.
Will MS affect my life choices?
MS is often diagnosed when someone is in their 20s or 30s and is making some of the big life choices like whether to follow a particular career path, settle down with someone or have children. If MS is diagnosed later, there may still be key decisions to make such as whether to financially support older children through university, or change career.
You may be worried that MS is going to make a big difference to your path in life and alter what choices you have. As everyone's MS is different, it's not possible to predict exactly how you will be affected and, consequently, whether this could change their path in life. However, you will naturally need to review your life from time to time and choose the best option for you - just as we all do.
In the short term
Life does not stop at diagnosis and it's usually best not to make major decisions too soon. It will probably be too early to anticipate what life with MS might be like in the longer term. Like many things, MS may influence the path your life takes and the choices that you make along the way.
Your friends, family and health professionals will all want to support you and will have their own opinions. Don't feel pressured by others to decide soemthing that you are not ready for and, perhaps, may never need to decide.
Over the longer term
Your symptoms will vary from day to day and from year to year, and this may take a bit of getting used to. If you are experiencing a new symptom, you may begin treatment and this may improve daily life.
Many people periodically think about where they are going in life. For some people, diagnosis with MS, or experiencing new symptoms, prompts them to review their life and consider making changes. You might like to think about the information and support that may help you in making decisions for the future.
Advice for someone who is newly diagnosed with MS
Making Sense of MS: In this short film we ask people what advice they would give to someone who has been recently diagnosed with multiple sclerosis.
How can I make the best choices for me?
Making any choice in life is a very personal decision although you may like to consult others and consider taking their views into account. We aim to give you ideas, make suggestions and get you thinking. We can point you to sources of information that may help but only you can decide what you'd like to do in life and what's possible.
You might like to consider these questions:
What's important to you?
- What are the priorities in your life? This can include the people closest to you.
- What are your goals in the next few years? Write them down as simply as possible. Keep the list short – a top three or top five can be good.
- Where should you make a start? You can't do everything at once so you might begin with the most important or the most urgent goal.
- How can you get motivated and organised? Leaving things to chance is unlikely to get you to your target.
How do you usually make decisions?
Your usual approach to life may influence your choices.
- Are you a risk taker or a more cautious person? Do you tend to carry on regardless?
- Do you usually make your own decisions or do you often rely on advice from others?
- Do you like to get background information and weigh up the pros and cons or do you prefer to go forward based on gut instinct?
- Is your usual approach the one you'd like to adopt or would it work better to go about making this decision in a different way?
Is there an MS factor?
For some people, life will carry on much as before. For others, MS may be having an impact and managing this well can make a big difference.
- Are symptoms affecting what you can do?
- Are you still adjusting to a new treatment? Do you have any concerns, perhaps over possible side effects?
- Are you pacing yourself well or trying to do too much?
- Do you get fatigued, either mentally or physically?
- Would it help to negotiate some changes? This could be at work or college, in your family or social life or in your leisure activities.
- Is there anything else you can do to help reduce the impact of your symptoms?
Getting the right balance
Although it can be good to set priorities or goals and then actively work towards them, many things in life are about getting the right balance.
You might like to think about the balances between:
- work and everything else in your life.
- family time and 'me' time.
- looking after others and looking after yourself.
- being busy and doing something relaxing.
- taking care of your body and your mind.
- being cautious and enjoying life.
Living life to the full after a diagnosis with MS
Making Sense of MS: In this short film people give their thoughts on how you can live life to the full after being diagnosed with multiple sclerosis.
Working in partnership
We all have different priorities and only you can say what's most important to you. Your goal could be something big like a career change or smaller like getting better sleep. You might like to get some background information or ideas.
Those around you can help you make decisions and offer you support to reach your goals. Involving your friends and family, talking to other people with MS and seeking advice from health professionals can all set you on a path that's right for you and give you more control of your life.
Family and friends
Any change you make to your life is likely to affect those around you so you will probably want to include them in your decision making. How much you involve them will depend on how close you are to them, how much you value their input and the nature of the choice you are making. You may want to sound out someone early on to see how they react to the possibility of a proposed change. That way you may get a good indication of what they think.
You may need to take their views into account if your life choice will have a significant impact on them too. Chatting it through to decide a way forward that works for all of you would be ideal but remember there may need to be compromises.
Your family and friends will naturally want the best for you but will have their own priorities, worries and pressures. You may need to explain clearly why making a particular change will make a difference to you and how you see it fitting in to all your lives. Listening is as important as expressing your own views. Keeping lines of communication open will also be key.
You may want to make some changes in how you manage your MS. These could be changes to lifestyle which may improve your overall health, getting better symptom management or adopting new ways of doing things so that you can achieve what's most important to you. Your MS team can support you.
Shared decision making is important. This is when you work with, and are supported by, health professionals to make decisions about treatment, based on the best possible information. There may be times when you would like a lot of support in making decisions and others when you want to be more independent.
Of course, you're only one side of the equation. Some doctors and nurses are very willing to debate the most appropriate course of action, whereas others prefer to give clear-cut advice about what they think is right for you.
Each of you brings something significant to the conversation. Your health professional will have knowledge and experience in managing MS. You are the expert on your own values, expectations and priorities and only you know how your body is feeling. It's important that you state what's most important to you.
At work and in education
Work and education are important parts of many people's lives. You can take an active role in managing your MS and understanding how changes to your working practices could make a positive difference. This means acting in partnership with your health professionals and employer to find the most effective solutions. There are individuals and organisations who can work with you to achieve this.
Sometimes the best course of action is to get professional advice so you are clear about your rights and responsibilities. Key areas where you may want to seek an opinion are on legal issues, housing, social care, benefits and finances.
You may need to pay for advice but there are organisations that may help free of charge. Citizens Advice provides free, independent, confidential and impartial advice on a wide range of issues. It has a large network of local branches and community locations where you can talk to an advisor face to face. It also provides support over the phone, by email and through webchat.
There are organisations which support people with specific issues, for example, Shelter can advise on housing issues, not just homelessness. The Disability Law Service supports people with a disability, their families and carers, who have legal issues including concerns about discrimination. There are charities which can advise on adapting your home to make it more accessible. they can also guide you when buying or adapting equipment and computers to make them easier to use.
The MS Trust
The MS Trust can support you in your decision making. If you have a question, you can call our Enqujiry Service on 0800 032 3839 or 01462 476700 or email email@example.com. We specialise in health information but can signpost you to other sources of support.
People with MS
Peer support is when people with a common experience share their knowledge and opinions as a way of supporting each other. The idea is that other people, including health professionals may be very knowledgeable about MS but don't have the personal experience of being diagnosed or living with the condition themselves. Peer support can take different forms either as a group or one to one, and it could be online, by phone or face to face.
Our Facebook group is a good place to ask questions and share experiences with other people with MS. If you are thinking of making a change in your life, you could explore options or ask for suggestions from the group.
What are the next steps?
Once you've decided on the top few things to tackle, have read through any background information you need, and consulted appropriately, what are the next steps? Here are some suggestions:
- If the topic is a large one or a tricky one, you could think about tackling it in stages so that each part is more manageable and you can see that you are making progress.
- Focus on what you can do. Are you being realistic? Are there things you cannot change?
- Consider being flexible so you can adapt your plans or goals if circumstances change.
- Start now! The saying "Every journey begins with a single step" applies when making life choices. Make a start and congratulate yourself on every inch of progress.
Nobody knows what life has in store for them. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now.
It is good to have something to aim for and then congratulate yourself on your achievements, big and small. You shoujldn't worry too much if you don't manage to do everything exactly as you planned. It's your life so be true to yourself and make the most of it.
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How is MS diagnosed?
Symptoms of MS can be part of other conditions, so it's hard to diagnose quickly. Find out about the different diagnosis tests.
What is MS?
Multiple sclerosis (MS) is a lifelong condition that affects the central nervous system with different people experiencing different symptoms.