So, you have haemochromotosis/the celtic curse/iron overload. This has no doubt been a bit of a downer for you. Since the day you were born your body has been filling up with iron, and your symptoms have been slowly accumulating and finally come to a head. You have been off kilter for some time and the side effects are preventing you from continuing to live in the way you are accustomed to.
If I present to you as some kind of happy clappy, mr motivator type, I'll undermine what you are going through. It will be patronizing to say 'it's going to be OK' and you'll most likely tell me where to get off. I am not that person. Honest.
If I present to you as some kind of happy clappy, mr motivator type, I'll undermine what you are going through. It will be patronizing to say 'it's going to be OK' and you'll most likely tell me where to get off. I am not that person. Honest.
Unless you were diagnosed prior to any damage or treated very early, the truth is, life is going to change, probably already has, the amount of change will in part be influenced by the severity of the damage caused. This article comes from someone with the condition and is about acceptance and developing resilience. You may even learn to be even happier than you were before your symptoms began.
The problem.
You have a condition that is systemic and invisible. Nobody can really relate to what is happening with you. Your symptoms are so diffuse, to acknowledge them all makes you feel like a hypochondriac. There is a chance you feel let down by the medical profession. The condition is still poorly understood, it is not conventionally treatable by medicines, so pharmaceuticals can't make profit, hence there is no financial backing. You are in pain. You can't concentrate. You are excessively tired. You have fluctuating or low mood. Family planning is no longer your concern. Keeping up with the day job and/or house chores is like wading through treacle. You can't remember a damn thing. You wake up and feel like a hippo has been sitting on you in the night. Your relationships have suffered. You feel less secure about your future employment and financial situation. You are concerned that you can't get travel insurance. You would love to go for a drink but you know your liver will protest. Some hobbies you used to enjoy are now impaired or not even possible. You are way too young for this. People ask you how you are - at best you respond 'OK', you are sic of this - You want to say 'Great!'
No doubt you could add to this list; hopefully you can subtract from it. In any case the question is - what is to be done?
With illness and the effects of the above its possible to undergo a kind of mental reprogramming, you feel the effects of iron overload everyday and you can become more the condition than you are you! The following five hints/things can remedy this and alter your mental programming to work in your favour. They are all interconnected and the 'Lord of the Things' is the fifth, so keep reading.
You have a condition that is systemic and invisible. Nobody can really relate to what is happening with you. Your symptoms are so diffuse, to acknowledge them all makes you feel like a hypochondriac. There is a chance you feel let down by the medical profession. The condition is still poorly understood, it is not conventionally treatable by medicines, so pharmaceuticals can't make profit, hence there is no financial backing. You are in pain. You can't concentrate. You are excessively tired. You have fluctuating or low mood. Family planning is no longer your concern. Keeping up with the day job and/or house chores is like wading through treacle. You can't remember a damn thing. You wake up and feel like a hippo has been sitting on you in the night. Your relationships have suffered. You feel less secure about your future employment and financial situation. You are concerned that you can't get travel insurance. You would love to go for a drink but you know your liver will protest. Some hobbies you used to enjoy are now impaired or not even possible. You are way too young for this. People ask you how you are - at best you respond 'OK', you are sic of this - You want to say 'Great!'
No doubt you could add to this list; hopefully you can subtract from it. In any case the question is - what is to be done?
With illness and the effects of the above its possible to undergo a kind of mental reprogramming, you feel the effects of iron overload everyday and you can become more the condition than you are you! The following five hints/things can remedy this and alter your mental programming to work in your favour. They are all interconnected and the 'Lord of the Things' is the fifth, so keep reading.
FIRST THING - CHOOSE YOUR RESPONSE
In any given situation. This is all you can do, it is the one thing, the only thing in your life you ever have control over. So lets make it a good one. Accept there will be changes and know that it is a universal law that with crisis comes opportunity. Your outlook and well-being is like a muscle, and could benefit from a work-out.
When you have been de-ironed the effort does not stop there. Maintenance begins and your iron is kept below a certain level. In the same way programming for your well-being and outlook cannot be taken for granted. All is mind. With a few tricks and a bit of effort it can be geared toward resilience and positivity. This is not just true for those of us with this condition but can be helpful for all of us that share the experience of being human. The following 4 tips will help you chose the best response.
Hopefully you have a knowledgeable and proactive medical team. Knowledge of the condition is currently developing/underdeveloped so many of us recognize that we really have to be our own 'health advocates' - we need to be 'response-able' this is why the 'second thing' can be vitally important.
SECOND THING - THE IRON CHAIN - CONNECT WITH YOUR NEW FAMILY OF IRON MEN AND WOMEN
In any given situation. This is all you can do, it is the one thing, the only thing in your life you ever have control over. So lets make it a good one. Accept there will be changes and know that it is a universal law that with crisis comes opportunity. Your outlook and well-being is like a muscle, and could benefit from a work-out.
When you have been de-ironed the effort does not stop there. Maintenance begins and your iron is kept below a certain level. In the same way programming for your well-being and outlook cannot be taken for granted. All is mind. With a few tricks and a bit of effort it can be geared toward resilience and positivity. This is not just true for those of us with this condition but can be helpful for all of us that share the experience of being human. The following 4 tips will help you chose the best response.
Hopefully you have a knowledgeable and proactive medical team. Knowledge of the condition is currently developing/underdeveloped so many of us recognize that we really have to be our own 'health advocates' - we need to be 'response-able' this is why the 'second thing' can be vitally important.
SECOND THING - THE IRON CHAIN - CONNECT WITH YOUR NEW FAMILY OF IRON MEN AND WOMEN
We are basically all genetically linked. We have a lot in common. We even have a Marvel superhero played brilliantly by Robert Downy Jr in our own image. We may even set off metal detectors in airports! We are a community in our own right.
The internet means we can find each other and share experiences, find a new sense of belonging. Facebook is great for this. Just type in Haemochromatosis (or hemochromatosis) and there are several well established and very supportive groups. You can learn a lot in this way as knowledge from experienced people from all over the world is 'pooled'.
Join your local society. A link to the UK group is here. Maybe you could add others you are aware of into the comments section at the bottom of this article. In time you may step outside virtual meetings and meet others in person.
The internet means we can find each other and share experiences, find a new sense of belonging. Facebook is great for this. Just type in Haemochromatosis (or hemochromatosis) and there are several well established and very supportive groups. You can learn a lot in this way as knowledge from experienced people from all over the world is 'pooled'.
Join your local society. A link to the UK group is here. Maybe you could add others you are aware of into the comments section at the bottom of this article. In time you may step outside virtual meetings and meet others in person.
THIRD THING - GET PERSPECTIVE
We know that all things in life, including life itself are impermanent - health doesn't last forever. This is our time to experience this change. We often believe that circumstances drive happiness. However, circumstances only account for about 20% of our happiness. Our attitude or mindset accounts for the other 80%.
Analyze what might be causing feelings of dissatisfaction? : Perhaps fear of the unknown, grief and loss - letting go, jealousy, unrealistic expectations. Establishing what these thoughts and beliefs are and getting them out in the open often helps us to deal with them.
Try writing them down, talking to someone you trust or sitting calmly with your eyes closed and thinking them through. Maybe get out into nature and focus on what you see, hear, and smell. See that life is more than just your immediate surroundings. Just doing this can help put life into perspective. You can begin to accept the changes in your life and begin to think of the good things and how lucky you are. (See Thing Five - Practicing Gratitude)
FOURTH THING - HELP OTHERS
You can already feel empowered. You have made a huge contribution to your family. By virtue of being diagnosed, you may be responsible for preventing the early death of countless members of your family, those who are yet to be born into future generations or indeed of your very own children or siblings. You may have solved the riddle of why those that have already passed, did so at such a young age. This stops with you and need never happen again.
By being supportive to those who are going through the same thing, not only are you improving their life but you are giving meaning to your own experience. This can be infectious, anyone that you help is more likely 'to pay it forward' - Helping someone in this way makes you realize how much you have grown, kick-starting your own acceptance and resilience. This also helps build community and strengthens the 'iron chain' (Thing 2) and becoming acquainted with others experience in this way helps develop Perspective (Thing 3)
FIFTH THING - PRACTICE GRATITUDE - THE LORD OF THE THINGS!
We know that all things in life, including life itself are impermanent - health doesn't last forever. This is our time to experience this change. We often believe that circumstances drive happiness. However, circumstances only account for about 20% of our happiness. Our attitude or mindset accounts for the other 80%.
Analyze what might be causing feelings of dissatisfaction? : Perhaps fear of the unknown, grief and loss - letting go, jealousy, unrealistic expectations. Establishing what these thoughts and beliefs are and getting them out in the open often helps us to deal with them.
Try writing them down, talking to someone you trust or sitting calmly with your eyes closed and thinking them through. Maybe get out into nature and focus on what you see, hear, and smell. See that life is more than just your immediate surroundings. Just doing this can help put life into perspective. You can begin to accept the changes in your life and begin to think of the good things and how lucky you are. (See Thing Five - Practicing Gratitude)
FOURTH THING - HELP OTHERS
You can already feel empowered. You have made a huge contribution to your family. By virtue of being diagnosed, you may be responsible for preventing the early death of countless members of your family, those who are yet to be born into future generations or indeed of your very own children or siblings. You may have solved the riddle of why those that have already passed, did so at such a young age. This stops with you and need never happen again.
By being supportive to those who are going through the same thing, not only are you improving their life but you are giving meaning to your own experience. This can be infectious, anyone that you help is more likely 'to pay it forward' - Helping someone in this way makes you realize how much you have grown, kick-starting your own acceptance and resilience. This also helps build community and strengthens the 'iron chain' (Thing 2) and becoming acquainted with others experience in this way helps develop Perspective (Thing 3)
FIFTH THING - PRACTICE GRATITUDE - THE LORD OF THE THINGS!
Buddhists, Indigenous and spiritual peoples have consciously practiced gratitude since time immemorial. In modern consumer society it is a skill that has been largely forgotten. Gratitude is what gets poured in to the glass to make it half full and turns what we have into enough.
Gratitude is currently receiving a lot of attention from psychologists. Studies show that it can not only be deliberately cultivated but that it can increase levels of well-being, happiness, energy, optimism, and empathy. It is an effective and measurable way to combat depression.
If this was Lord of the Rings, this would be the ring that binds and strengthens all of the others. I guess we could say that for the purposes of this article it is THE Lord of the Things!.
There are different ways to actively practice gratitude. You may want to start a log book. Just note down a couple of things every day that you are grateful for. Big things from the past or small things from the day. Maybe you remember a school teacher that believed in you, write about this, or maybe you recall your greatest achievements and the people who helped you on your way, or perhaps you noticed a smile flashed by a loved one, or you have a tree that bears fruit, a kind word from a stranger, the fact your knees don't hurt that day, anything! Express your gratitude to those close to you, or to a complete stranger! update your Facebook status with the things you are grateful for.
This is reprogramming your mind, changing the architecture of your outlook. You will actively look for things that make you happy and not take things for granted. You are also building an archive of things that could give you a lift in the future.
Gratitude is currently receiving a lot of attention from psychologists. Studies show that it can not only be deliberately cultivated but that it can increase levels of well-being, happiness, energy, optimism, and empathy. It is an effective and measurable way to combat depression.
If this was Lord of the Rings, this would be the ring that binds and strengthens all of the others. I guess we could say that for the purposes of this article it is THE Lord of the Things!.
There are different ways to actively practice gratitude. You may want to start a log book. Just note down a couple of things every day that you are grateful for. Big things from the past or small things from the day. Maybe you remember a school teacher that believed in you, write about this, or maybe you recall your greatest achievements and the people who helped you on your way, or perhaps you noticed a smile flashed by a loved one, or you have a tree that bears fruit, a kind word from a stranger, the fact your knees don't hurt that day, anything! Express your gratitude to those close to you, or to a complete stranger! update your Facebook status with the things you are grateful for.
This is reprogramming your mind, changing the architecture of your outlook. You will actively look for things that make you happy and not take things for granted. You are also building an archive of things that could give you a lift in the future.
Now - going back to an early observation from the introduction - People ask you how you are doing and you say just 'OK'. Following the five things here should help you say 'Great' and mean it. In summary you are now focused on the blessings of life, rather than the frustrations. You still expect difficulties but now have the tools to deal with them.
Good Luck and I hope you found this useful. Writing this article and clarifying my approach has definitely helped me. Please click LIKE below and be invited to add comments and suggestions.
THANKS!
Martin
Good Luck and I hope you found this useful. Writing this article and clarifying my approach has definitely helped me. Please click LIKE below and be invited to add comments and suggestions.
THANKS!
Martin
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