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 major difference to your life and affect the choices you have.
Life choices can be the big decisions in your life, like whether to get married, move house, start a new relationship or change career. There are also many day-to-day life choices, such as how much you exercise and who you have as your friends.
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. Or it could be a surprise that throws us off course, at least for the time being.
Did anything change after you were diagnosed with MS?
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.
There are many aspects of MS that may, or may not, affect your life choices. The symptoms you experience may affect decisions around your career or aspects of your lifestyle. There are also a wide range of disease modifying drugs available now to treat MS and these treatments may require you to consider future life choices too, such as timing around when to start a family and whether certain treatments will fit into your working life or around other personal commitments. Receiving a diagnosis of MS may also cause you to reflect on your lifestyle in general and you may start thinking about changes you could make to be healthier and stay as well as possible.
As everyone’s MS is different, it’s not possible to predict exactly how you’ll be affected and, consequently, whether this might mean significant changes to how you’d pictured your life would be. However, you’ll naturally need to review your life from time to time and choose the best option for you – just as we all do.
Life doesn’t stop at diagnosis and it’s usually best not to make major decisions too soon. It’ll probably be too early to anticipate what life with MS might be like in the longer term. Like many things, MS may influence your life 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 something that you’re not ready for and, perhaps, may never need to decide.
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 do experience new symptoms, it’s important to let your MS team know. They can talk through treatment options to manage your individual symptoms and, if appropriate, disease modifying drugs to reduce future MS activity. You may need to make decisions around treatment which will influence your life choices, but these treatment decisions may improve your current and future daily life.
Many people periodically think about where their life is heading. For some people, diagnosis with MS, or experiencing new symptoms, prompts them to review their life and consider making changes. In the following sections, we offer some suggestions and highlight sources of information and support that may help you in making decisions for the future.
Advice for someone who is newly diagnosed with MS
How can I make the best choices for me?
Making any choice in life is a very personal decision. There are many factors that can influence your choices, from your faith and spiritual views to your financial situation and family commitments. You may like to consult others and consider taking their views into account when making important decisions.
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 in your particular circumstances.
You might like to consider the following questions.
- 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 decisions on your own or do you like to get advice from others?
- Do you like to do some research and weigh up the pros and cons, or do you prefer to make decisions based on your gut instinct?
- Is your usual approach the one you’d like to adopt, or would it be better to go about making this decision in a different way?
- For some people, life with MS carries on much as before. For others, MS may have more of an impact and managing this well can make a big difference.
- Are symptoms affecting what you can do?
- Has MS impacted, or made you more aware of, your mental health? Is this an area you’d like to focus on or consider more when making decisions?
- Are you still adjusting to a new treatment? Do you have any concerns, perhaps over possible side effects?
- Do you get fatigued, either mentally or physically? Are you pacing yourself well or trying to do too much?
- 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
- looking after others, like your family, 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
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 something smaller like getting better sleep. You might like to get some further 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 help you make the choices that are right for you and give you more control of your life.
Any changes you make are likely to affect those around you, so you’ll probably want to include them in your decision making. How much you involve them will depend on how close you are, how much you value their input and the nature of the choice you’re 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 is 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’d 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. Others prefer to give clear-cut advice about what they think is right for you. Some take a more relaxed approach and leave certain decisions down to you once they’ve advised you on the options.
Decision making can feel more difficult if your health professional’s approach doesn’t quite match what you’d like in terms of guidance and support. If you feel like you need more direct guidance on the best choice for you, or if you’d like to explore more options than your health professional has presented, it’s important to raise this with your MS team so you can make an informed decision.
Each of you brings something significant to the conversation. Your health professional will have knowledge and experience in managing MS. You’re 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. Writing this down and taking it with you to your appointments can be helpful.
Work and education are important parts of many people’s lives. Some people with MS may find that their symptoms have an impact on their ability to work or study, and you may need to decide whether to disclose your MS at work or in education.
Letting your employer or education provider know about your MS can open the discussion around adjustments that can be made to help you continue to work or study. This may include a dedicated parking space near the entrance to the office, more flexible working hours, or a desk in a cooler or quieter part of the office. In education this may mean extra time to complete assignments, having a quiet place to study, or studying part time instead.
Working with your employer or education provider, with the support of your health professionals, can help you find practical solutions that will enable you to continue to work and study, and fulfil your professional goals.
Many people with MS may worry about having to give up work or their studies in the future. Try to avoid making any big changes, like giving up work, soon after your diagnosis. Many people never experience symptoms severe enough to stop them working or studying. Take time to consider the future and make a decision at a time when your MS is stable and well managed.
Whether to stay in work, change your career path or leave the workplace should be your choice. You have options, and you do not need to feel under pressure from other people to make a change that you’re not happy with. If you think you’re under pressure to change your working life against your best interest, do seek legal advice, contact a union representative or talk it over with a supportive colleague.
If you do decide to leave work or education, think about other activities you could do to keep connected to the working world and your peers. You may wish to volunteer for a charity or club, take up a new hobby or do some travelling. This can help you maintain your self-esteem, continue gaining skills and knowledge, and pursue your personal goals.
Sometimes the best course of action is to get professional advice so you’re 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. ACAS provides free and confidential advice to employers, employees and their representatives on employment rights, best practice and policies including disability discrimination and reasonable adjustments.
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 can support you in your decision making. If you have a question, you can call our helpline on 0800 032 3839 or email firstname.lastname@example.org. We specialise in health information but can signpost you to other sources of support.
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 they don’t have the personal experience of being diagnosed and 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.
Once you've decided on the top few things to tackle, have read through any additional information you need, and consulted with any appropriate people, 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. That way you can see that you're gradually 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.
- Remember, it's OK to change your mind – you never know what else may come up! Whatever choices you make, they're always your decisions.
- 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.
None of us know what life has in store for us. 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's good to have something to aim for and then congratulate yourself on your achievements, big and small. You shouldn'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.