Creating Pathways to Understanding

Dealing with Long Term Health Conditions

Finding out you have a long term health problem that will impact and change the way that you live can be very difficult to deal with. It can sometimes be very isolating, because after all only you know what it is really like to live with your condition in your circumstances, in your street, with your family, with your beliefs, with your experiences.  So only you know how you feel.

No one can tell you how to feel and no one can know what is the best or right thing to say, some may even avoid talking about it altogether and you may prefer not to think about it yourself! We all deal with things in different ways and we are all effected by the same conditions in the same way.

There are three major things to look out for during your journey of coming to terms with your long term condition.

Find Out About Your Condition

The first is denial of the diagnosis and information you have been given. It is possibly one of the most amazing human responses when we feel worried is to try and ignore it so it somehow ‘goes away’, forgive yourself if you can relate to that (because we all do it), but really try and acknowledge what you condition may mean for you, listen to people around you who can offer you information, because the sooner you can realise what may be in store for you, the sooner you can build strength to take control of what you can, which will help you to feel empowered. It takes everyone different lengths of time and different levels of difficulties for them to come to terms with what is happening in their life. Although we may think of it as an old saying, time is the best healer and things really can become easier to accept with a bit of time. Sometimes the only way forward is through, it may not always be easy, but the more life throws at us the more we can learn to deal with. We all live and learn, we all change, we all need to feel accepted and worthy somehow, and we all feel insecure from time to time, but only you know what you need to make you feel good.

Think; Recognise; and Take Back Control

The second thing is your state of mind and mental health can struggle and it isn’t always easy to be positive when you feel lousy! It is not easy learning to cope with a problem that won’t go away. This can be particularly difficult for people dealing with chronic pain day in and day out, those who feel restricted in some way, unable to do things they want (when they want) and those who fear things may get inevitably worse. It can be frustrating and tiring dealing with everyday life. You can sometimes feel unappreciated or excluded because you can’t do something you would like to, or if you can’t take part in an activity or something that you miss. Some people find that medicines designed to help the problem causes other symptoms that they feel you could do without. Also you may be more tired if you use pain relief and it may sometimes feel like an ongoing struggle trying to find a balance that feels right for you. Often we have multiple problems which all make others worse at times, and sometimes we feel fed up (of course that is so understandable), but if you find that you do feel like this sometimes, you can discover new ways to help you to feel better.

Often we find that no one seems to understand our situation, and often we feel increasingly isolated and alone with how we feel. It can be difficult for some people to open up and talk about things, but try really hard to let your thoughts and feelings out, in whatever way feels right for you, but try not to bottle things up if you do feel your mood has been low for a while. Of course once again, we are all different and none of this may apply to you (hopefully you can talk freely about how you feel), but if you can relate to any of this, you owe it to yourself to try and speak about it so you can find ways of dealing with your emotions or moods, and remember, even though you may feel like it sometimes, you are not alone; and it is totally normal if you have stress, anxiety, worry and/or depression when you are dealing with a long term condition.

The brilliant news is the absolute majority of people who experience mental health difficulties fully recover

Also those with long term mental health conditions can manage perfectly well and live a fulfilling and active life. However, if you know you are feeling very depressed, or are having symptoms that you do not recognise, and you try to ignore it, you may become physically poorly as your body try’s to tell you ‘you are not thinking healthily, something is wrong’. Often recovery takes longer the longer the symptoms have lasted for. It is very important to get help as early as possible, as recognising any changes in how you are feeling may be much easier to deal with than you think.

Whatever We Focus On We Really Feel!

 Of course we are all different, so seek help in a way that feels right for you, but do get help! Speak to your GP, ask online through websites, call someone (if it someone that you don’t know, what does it matter?) Talk to the people you feel closest to, speak to others who have been through similar, better still get out in the community or take part in something you have never done before, meet new people, try not to allow yourself to feel alone, try and reach out. Also remember, people may not entirely understand your frustrations or difficulties if you are managing difficult thoughts and feelings, because they are not you, but they may really be trying to help. Try and let people help (even if they are sometimes clumsy in how they say something) and try and learn about other people’s experiences too. How often do we find ourselves shocked or horrified by a new story?! Sometimes awful things happening to good people, and many of us can usually take comfort that there is someone worse off than us, but during times of poor mental wellbeing, it is sometimes difficult to feel that way, not only because we don’t know what it is like to be someone else but because we may be in a difficult state of mind or not thinking clearly.

If we get help early when we need it, we can feel better faster!

There are lots of people who can help you feel better in all sorts of ways, depending upon what you like and your personality. If you are worried about your mental health and are dealing with a long term condition, login to our members section and click on Self Assessment if you would like to find out more about looking after your mental health, and please do speak to someone, you can find details of people who may be able to help on our Help and Advice page.

 

 

 

Look After Yourself!!

You know what is best for you! You are the only expert of what it is like to be you; you are an expert of your experience

Dealing with a long term condition isn’t about trying to ‘fix’ the problem, because sometimes that just isn’t the case, instead we have to start thinking about how we can best cope with what we have got. Some people beat themselves up and asking themselves “if I had done something different, would things be different?” It is what it is and it is not your fault, you never asked to have a long term condition, don’t blame yourself, that won’t make you feel any better.

It is really important to realise that what you focus on you are going to feel more intensely. That is to say if you continually think about something bad then it may end up make you feel worse. If you can focus on something that makes you feel good it can help you feel a bit better. Sometimes distraction can really benefit pain for example, if you can take your mind off the pain, do something that you find enjoyable, that makes you feel good. This will be different for everyone, some people find they can master meditation, others may like music, another may love reading books, some people like to socialise, some love films, arts and theatre, others love dancing singing and some people love the feeling of exercise, some like to surf the internet; so whatever it is that you enjoy, make sure you include it in your care plan (if you have one) or in your daily routine. Try not to limit yourself, there may be some things you really can’t do, (maybe for you watching other may be satisfying, and for others that would be frustrating) but have you spoken to anyone else with the same conditions as you? Could there be an alternative way?

For instance one example is, if you love reading but find it difficult to hold a book for periods of time, there are computers and tablets which can be voice activated; screens which read the contents out, there is also software which can type up what you are saying as you talk. You don’t have to know all about technology to benefit from it, sometimes it is about thinking ‘outside the box’ for solutions, then asking others for their ideas on what may be possible.

Perhaps it is time we became a bit more creative and imaginative with what can help us feel a little better?! What helps us to feel better with a particular condition? Because when we take control over any problem, it becomes very empowering. Feeling like we have achieved something, learned something, had fun or made the effort to do something nice should be part of your everyday life in order to help you feel fulfilled and happy (regardless as to any health conditions). We believe you are worth the effort! We hope that you know that you are! We hope you believe that you deserve to be kind to yourself and take steps towards making yourself feel a little better. Dare to dream and let your imagination run wild once in a while, there are many people who have achieved amazing things with all sorts of obstacles to overcome, but they did it regardless. Perhaps, now more than ever is the time to start trying to enjoy life a bit more, as you most likely already have enough on your plate! Also we all benefit from seeing a familiar happy face, don’t we? So no matter what the condition is that you are living with don’t shut yourself away, try and really make an effort to take part in something that makes you feel good, and how will you know until you have tried it?! If you cannot get out, try reaching out to people, call, write, talk, and try and find ways to interact more when you can, there are some amazing services and people ready to help you if they can.


Of course the beautiful thing about you and your nature is that you are resilient. You have amazing power to adapt, change and build resilience, we all do; and we tend to find this inner strength when we are faced with one of life’s weird and wonderful difficulties! Life is not all about what happens to us it is what we do about things and how we react to it that really counts!

 

The human body can respond incredibly well in healing itself, and the NHS can support our every medical need, with more and more skilled intervention, so make sure you keep on top of your medical needs, don’t simply hope something will improve, take action when you know you need some medical help. Listen to advice from medical professionals and talk to them about your ideas about what may help you to cope better with your condition, so that they can consider your thoughts and feelings. If you have questions you want to ask (or are concerned you may forget when you are there) write them down before you go to an appointment, health professionals are more prepared to help you with social things that also affect your health than ever before. 

Also consider that there will be times when it isn’t a medical solution that you are looking for. It may be employment or money worries, relationship problems, housing issues. Sometimes it is human contact we need, to feel assured, to laugh and forget about things for a while, to talk and relate to people. Other times we need to feel independent, even if we need to explore different options in order to find a way to look after ourselves.

We should all learn to appreciate ourselves, despite any problems or flaws, no one is perfect. We all have amazing skills though (all of us) which we can tap in to and use when we need to. We are all entirely different, yet we all have similar experiences in similar circumstances, it helps us to relate to others. Sharing experiences can be really relieving if someone tells you about something you believe you have in common, we suddenly realise other people do feel like us, even if they have completely different lives.

They say ‘A problem shared is a problem halved’ and we think that ‘they’ (whoever ‘they’ may be) must be very wise!!

 

 

PRACTICAL TIPS

ü  Listen to advice from medical professionals and talk to them about your ideas about what may help you to cope better with your condition; and make sure you keep on top of your medical needs, don’t simply hope that something will improve or put off calling and making an appointment, take action as soon as you know you need some medical help. Seek advice from people with experience of your condtion.

 

ü  Take your medication regularly and as prescribed, do not let yourself use an excuse not to take them, if you have side effects speak to your GP and do not take anything else without speaking to your local pharmacy. If you need help ordering them many practices can help you with setting up ways to collect them, there are also drop off services. We are incredibly fortunate to have the access that we have here in the UK to prescribed medicines, and they can be really helpful for controlling some conditions. If you feel reluctant to use a prescription for any reason talk it through with your GP or Specialist or health professional, you may be able to find something else that may suit. Many people sadly suffer when they don’t need to because of fear or resent of needing medication. A & E has to deal with hundreds of thousands of cases each year that could have been prevented if a patient was taking their medication. If you are struggling with any aspect of taking medicines talk to your health professionals and try to find ways to make sure you have what you need to help you to control the symptoms of your condition. Hospital is the last place you want to end up unless absolutely necessary, as there may be higher risks of contracting antibiotic resistant infections (particularly if your body or immune system is already vulnerable because of your condition).

 

ü  Make a list of what you consider to be your biggest challenges, regarding your condition, then consider as many options as you can think of that could possibly help you with each of those challenges. If you can’t think of any, log in as a member by clicking here and ask other people if they know of anyone who has found a solution or different idea for what you want to do. Perhaps there may be something you could benefit from that someone else has tried? Or maybe you have a story or an idea that you would like to share?

 

ü  Do things that make you feel good and try to focus your mind on whatever it is that make you feel good. Make a conscious effort to try and think about the good things in your life, and if you find that really difficult or impossible to do, we recommend you speak to someone about how you are feeling. You may wish to try something you have never done before, living with long term health conditions may be all the more reason?! Make a plan of things you may enjoy, think about things you have enjoyed in the past and remember times when you felt really good. Take ideas from others and see if they work for you. You never know what you like until you try something!

 

ü  Be honest, try not to bottle things up, communicate how you feel in some way, whether this is talking face to face with someone, seeking online advice, writing a diary, blog or journal or getting involved in helping others dealing with something similar to you. Whatever way you’d like to do it, try and explain how you feel, no one ever even needs to read them if you don’t feel you can share it, but after a period of time, we look back and can reflect on what we felt like and often find comfort in knowing when we have come through a tough time. Find a way to express yourself that works for you.

 

ü  Create a support network for yourself. Try and think of several people who you feel you can call upon in circumstances that you may need support or help. Have a plan of how to contact them when you feel you may be most likely to need them (if you can predict it) and ask them if it’s okay to make them part of your plan. Make a note of their commitments or daily schedule so that you know when is the best time to contact them without feeling like you are disturbing them, and ask them directly if they can help you with the things you find most difficult. It could be a family member, carer, friend or neighbour; it could be a support worker, social worker or another community worker. There may be charities and other organisation which can also help with your particular condition. Explore the options that will work best for all of you.

 

ü  Try and find a balance that is right for you. If you do too much or too little of something and you know it affects your health condition, then set yourself tiny goals to begin with and do something that makes you feel positive to feel a little healthier. You can climb a mountain step by step, and can lose a tonne in weight pound by pound, you can change anything about your habits whenever you want to. Changing slowly and consistently usually offers the best results for people, working with other groups who have the similar goals, and focusing on the benefits and end result (rather than what you need to ‘do’ in order to make those changes happen) also make changes more effective long term.  Setting challenges for yourself and achieving goals makes us feel fantastic, so matter what you like to do, try and do a bit more of it.

 

ü  Pain management. If you experience a lot of pain it is really important to try and manage it, rather than trying to ignore it or to continually focus on it. This is really very difficult. Many people find medication for the pain relief that they need has other side effects which can also affect their living patterns and the body’s natural rhythms. You know what medication works best out of the ones you have tried, if you cannot cope go back and speak to you GP. There may be other things you can try. Likewise if you feel a medication id making you too drowsy or is too strong, talk to your GP about doses or you may wish to reserve that pain relief for the night time dose, to help you get the best nights’ sleep possible. Don’t suffer or endure pain, if you have been prescribed medication make sure you take it. Many people do not like taking pain relief, but it can be really effective and side effects often level out after a period of time. Pain relief medication should not be used all the time, only take pain relief when you really need it so it has the maximum benefit (unless you have been told otherwise by your GP or Pharmacist). If it is at all possible for you try and distract yourself, watch something, listen to something and try and make it something you enjoy. Try to relax and unwind, thinking about something else whenever possible. Studies suggest that people find ‘doing something’ helps them to deal with pain better than when they are just sitting or lying down feeling it. If you are dealing with pain in everyday life you may need to tell people around you if you are having a bad day. If you are in employment talk to your colleagues about it, and employers may be able to find ways for you to work more comfortably.



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