The problem with many long term health conditions is that it is not always obvious externally. It is not as if there is a sign on your head saying, this person has a long term health problem. People do not always understand that although you look ok, inside you are definitely not. The only indication seen externally maybe that you are perceived as grumpy, miserable, moody or anti-social. Link.
I feel that there is not much difference whether the long term health condition is psychological or physical as to how the world at large perceives the individual. So much goes on inside such as pain (emotional or physical), stiffness, circulation problems or breathing to name a few. It is hard when you may look fine but you struggle to communicate a problem or just handle day to day living.
The tiredness that comes from many long-term health conditions can be disabling in itself
and can cause many social and logistic problems. Side effects from medication and treatment again can lead to physical and psychological problems and difficulties.
I personally don’t want to have to explain on a daily basis to people about my condition or problems due to medication. I get bored of people’s response when I do explain to them “ Oh but you look so well”. I sigh to myself with the reassurance that is amazing what you can overcome with a positive and realistic attitude and as a female a good make up bag and hair cut.
One of the biggest problems I have found is engaging with health professionals. Don’t get me wrong they are very kind and often supportive, however, making life choices and how you manage your condition is unique to you. It is easy to just sit there and be told what to do but remember this is your life, and frustration can lead to more ill health. I certainly ask questions and why I need certain treatment as well as the side effects of medication. It is vital to work as a team so treatment is effective and suitable for you.link
There are many support and help groups and organisation, which many people find invaluable. They are a great source of information. I am not a great lover of support groups, as I like to have time away from my condition and find that I focus too much on the negative side if I go to them, this is not avoidance but a personal preference.
I do feel being well informed about your conditions is important, however I am wary of the Internet and how easy it is to get inappropriate information. Nothing winds a doctor up more than a patient quoting information sourced from unreliable sites to them. Talk to your doctor and ask their advice and interject what you have found out, in my experience they like to be asked and will discuss options with you.
So for me having a long term condition means I have to look after myself and know what helps and does not. This is my self help list, it is not from a medical perspective but what I have learnt works for me.
- If you don’t tell people about your condition you cannot get upset if they do not understand or appreciate your problems. It is your choice to tell anyone or ask for help. Sometimes people just don’t want to know or cannot cope with it.
- Be informed about your condition – Ask the experts, read books and keep up to date on latest treatments and support.
- Stay as healthy as you can -take responsibility for your own life style. If you follow an unhealthy way of life it adds to stress and ill health, moderation is key.
- Learn to manage stress – recognise stress will happen and have good support and strategies to help you. For me stress makes things far worse, I can push the boundaries physically to a degree however with stress, is a different ball game.
- Have a good support network – be aware of who is best to help you given the situation, sometimes the people who offer support are not always the best to give us advice.
- Find ways to manage pain other than painkillers as it easy to become reliant on them.– visualisation, mindfulness, and meditation – breath work. Learning to relax and manage stress can do a lot to help to manage pain.
- When you visit a health professional take a list of questions with you. Don’t be afraid to ask if you don’t understand. They are there to help and support you to have the best and healthiest life you can. Link
- Be realistic about what you can achieve in a day, try using the spoon technique to help link . Frustration and being unrealistic about what you can achieve can make symptoms worse. Be aware of who you are now not what you were. Learn to listen to your body. Pain and tiredness are telling you something.
I live a happy and contented life, yes the pain and fatigue hits me some days and the frustration does kick in. When this happens using mindfulness and meditations helps me to stay in the moment and go with flow, in the knowledge that all things pass. I can always find the rainbow after the storm.