What is Chronic Illness?
In short, Chronic illness is any disorder that persists over a long period and affects the body, for example, heart disease, cancer, diabetes, stroke, and arthritis, osteoporosis, ALS, disabilities; cystic fibrosis, asthma, fibromyalgia, MS, the list goes on.
How does it affect your mental health?
When first diagnosed it most likely you will feel anyone, or a combination of, any of the following afraid, alone, angry, stressed, anxious, ashamed, depressed, helpless, overwhelmed, numb, in denial, panicky, relieved, powerless, sad, shocked. It is perfectly normal to have these feelings and understandable that you would not to be able to comprehend what the doctor is saying to you. That is why it is important to have someone with you when getting results from tests you have had. Doctors are fully aware you will not take on board what is being said at the time, in hospitals, there are many specialist nurses for different conditions available to talk to when you feel up to it, they can explain further what your diagnosis means for you and how it is treated. You can always ask to speak to the consultant again as well when you have prepared your questions to ask him, you might like to bring someone then too as they can help take notes and maybe they will have further questions you may not be able to think about at the time. (I would highly recommend you bring someone particularly at the start) Be prepared for these consultations as best you can and never let anyone fob you off. Always feel free to get a second opinion if you aren’t happy. In fact, I recommend you see this as you build a team, where you are the member in charge of how things will go, helped by your consultant and any other trained specialists needed to help you make the most of your life. Having a chronic illness doesn’t mean it’s time to sit by the fire waiting for death, it can be a time of re-evaluating your life and not letting this illness stop you leading a great life.
Being pro-active helps, so how can you help yourself so your mental health doesn’t suffer?
Take time to make your decisions & never let anyone rush you.
You are going to go through a whole range of emotions initially, as will your family, so now isn’t the time for any major life changes. Some people may feel compelled to do this, this is usually in response to fear and the need to feel in control of their lives again. It is never a good decision to change too much until you’ve had time to think and are feeling on a more even keel emotionally. I would recommend getting some form of counselling first before making any decisions at all at this time. (There are some illnesses where you will need to make decisions, so ask your doctor how much time you can safely take before making them.)
Now is the time to get the support you need from support groups, your team of supporters and counselling.
Remember you don’t have to go through this alone, there are a number support groups for your family and you out there, check this out with your hospital or the national organisation for your condition will have details of any local groups in your area. Research on support groups shows that participants feel less anxious, experience less depression, have a better quality of life and have more success in coping with their condition. Don’t forget support groups online also (an example here would be #ablehour every Thursday at 8 pm GMT on Twitter for people with disabilities, their families and carers) but be careful of any claims made for miracle cures or false claims etc, you don’t need to get caught up in anyone else’s problems or dramas either.
Plus this is now the time to gather your support team around you. Family and friends that you know will be there for you no matter what will make up the bulk of your team of supporters. Sometimes it will feel natural to want to withdraw from everyone, even those closest to you, but that will only prove detrimental to your mental health long-term as it can lead to a worsening of any anxiety or depressive symptoms you may have. No matter what your situation, and I know you may find it hard to do so, but having other people to turn to will help you know you are not alone.
Don’t forget a good counsellor or psychologist can help you deal with the emotional turmoil you or your family may be facing so don’t rule this out. If you find that your initial reactions have worsened over a period of 3 months then it is time to talk about it, the sooner you get help the sooner you will feel better.
Talk to your doctor, consultant or any other specialist you need to help with your condition.
As I’ve said, see your GP, consultant and other professionals yo need as part of your team to help you. It can feel uncomfortable being in a hospital or talking to these specialists but research has shown that good communications helps to improve your physical and mental health. A good place to start is by writing down all of your questions and taking them to your GP, consultant or the specialist nurse in the hospital to discuss your questions and concerns in more detail. Ask your doctor what specific steps you can take to optimize your health. Remember accurate knowledge can help you feel empowered to make the changes needed to help yourself.
Note: Good communication is a two-way street and you will want to get the best out of your appointments so be prepared for your visit with questions to ask, bring someone with you to make notes and ask further questions for you if you need, bring a list of all medicines your on, never feel ashamed of discussing any issues you have and asking for a referral to other services or for a second opinion if you need.
Remember to be proactive in this, you are in charge of your own life, make sure you are informed of all treatment plans and that you have your say in how things will proceed.
Get informed about your condition.
But stay away from deceptive advertising and only get information only reputable sites, groups or books, such as a national organisation for your condition. Remember information will help you feel empowered and ease any anxiety and fears you may have, you will also feel more like taking charge of the situation when you feel more self-confident which will, in turn, help your mental and physical health.
Don’t forget to take a breath and do some self-care now.
You’ve been caught up in the stress of everything that has happened and we forget to just stop and breathe. Learning some form of meditation is important as it will help you relax, take the time you need to think about what you want to do and reduce your stress levels. Remember you have taken some important steps in getting to grips with your condition and are making proactive choices for you. Now is the time to find time for you, let yourself take time to review your priorities in life and a get little self-care.
So if you want to do some self-management and make some changes?
Self-management of chronic illness means that you take responsibility for doing what it takes to manage your illness effectively. In self-management, as I’ve said you and your specialists are partners in care. Remember you will have good and bad days so having a self-care toolkit in place will help and there are many things you can do to help yourself including the usual suspects of healthy eating, appropriate exercise (ask your physio), cutting back on alcohol and cut out smoking. So what else can you do?
Pick one problem & get specific about tackling it
Making any kind of change can be scary, so if you have a lot of things that need changing just pick one, make it something small at first to give yourself the confidence after a quick win, you need that now more than ever. In fact, it doesn’t have to be a change it could be an addiction to your life such as meditation, or eating fruit if you don’t normally do that. Think small here and for a short period of time for a quick win.
Now you might find you can take an honest look at the unhealthy aspects of your lifestyle. Start with a particular behaviour that you’d like to change in order to have better control of your illness. Be very specific here with your goal, for you will succeed better that way. For example you want to take up exercise, be specific about what kind, ask your physio to help, find out where you’ll go if you need to, mark out the time and days you will do this exercise in your diary, do you need any kind of equipment, get as specific as you can. Don’t just say I’m going to exercise, more likely you probably won’t until you get specific and add it to your diary.
You will need to plan ahead, for example, if you walk daily then make plans for walking on rainy or cold days by buying wet gear, gloves, hats or scarves. If you know your condition worsens in bad weather then you may need to swap your walking for some other form of exercise on those days, so what will that be? Planning ahead will tackle any problems face on and then they won’t prevent you from keeping your goal that day.
Check on your confidence level and keep a journal.
After you have completed your goal for the day check your confidence level and review how you feel. Your goal may not be achieved after one session but journaling about how good you feel will help boost your confidence and you can look back on bad days to see how far you’ve come. I will always recommend journals as part of any self-care routine as they help you sleep better, reduce your anger and stress levels as well as boost your positivity.
Other things to consider now.
Try to manage the elements in your life that are within your control and as I’ve said review your life’s priorities. You may not be able to control certain aspects of your condition or the people around you, but you can choose to eat healthy meals, take medications as prescribed and spend less time with people who aren’t supportive.
Minimize stress by letting go of unnecessary obligations. For a time you may decide to reduce work, or volunteering in groups or committees. It’s up to you, but you can ask for help from friends and family to step in and take your place with volunteering, but don’t make it a guilt trip for them. It’s so important to have that support team and to communicate with them on how they can help you. People will feel better knowing they have helped particularly if it is practical but remind them sometimes it’s just nice to sit and talk about the mundane aspects of life and not your condition. Don’t forget the most important part and that is to have fun, humour is a great healer. too.
Illness can be stressful for an entire family. It’s common for couples to experience strain on their relationship and family finances will also be impacted. Try to see things from the other’s perspective and keep the lines of communication open. Plan for some alone time with your partner, family and friends will be happy to help with babysitting. Encourage your partner to make time to care for himself or herself, especially if he or she is your primary caregiver, join a support group of their own and get counselling if needed (I strongly recommend counselling here).
Reach out to MABS if you need help with your mortgage or creditors and make sure you have all the benefits and a medical card you are entitled to.MABS will be happy to talk directly to a mortgage company or creditors thus leaving you free from that added stress.
If you have children it can be a very frightening time for them and they too may need counselling to cope. make sure you let their teacher/school know what is going on as they may be able to support your child better in school. Schools may also have access to counsellors or supports for your child too.
Never be afraid or ashamed to seek the help of support groups, family, friends or from a psychologist or counsellor. They can help greatly, groups can not only provide tips on how to get through the day with a chronic illness but also to know your rights and entitlements. They can help point you in the right direction for further help including financial advice and they can help you realise you are not alone in this as there are many people dealing with the same issues every day.