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I've been living with impacts of a rare, currently incurable, illness for around 20 years; here are some of things I've learned:
Your experience of a long term illness is unique to you and valid,
other people with the same condition may have similar or very different experiences
Your experience of a long term illness is unique to you and valid,
other people with the same condition may have similar or very different experiences
You will soon find you know more, and become more expert than most, possibly all of the doctors you see
Some doctors understand this, and will be brilliant and work with you in partnership
Other Doctors will find this very challenging, and appear confused or struggle to listen
Some doctors understand this, and will be brilliant and work with you in partnership
Other Doctors will find this very challenging, and appear confused or struggle to listen
Coming to terms with & accepting what long term & incurable means is hard for you, for your family, and also for your doctors.
We are used these days to be able to be fix things and be fixed
- or if you work in the medical profession - having a treatment that will cure someone
We are used these days to be able to be fix things and be fixed
- or if you work in the medical profession - having a treatment that will cure someone
Because your long term incurable illness cannot be fixed on bad days you may feel broken
It may impact your mental health, you may experience grief or depression
If this happens I recommend seeking help from professionals with experience of counselling people in your position
It may impact your mental health, you may experience grief or depression
If this happens I recommend seeking help from professionals with experience of counselling people in your position
Managing your illness can feel like an extra job
You need to do extra work to seek reasonable adjustments (from your employer if you work), and/or seek state benefits
You have to do extra work to explain what you can & cannot do to colleagues, friends, family, even strangers
You need to do extra work to seek reasonable adjustments (from your employer if you work), and/or seek state benefits
You have to do extra work to explain what you can & cannot do to colleagues, friends, family, even strangers
People will get uncomfortable when you explain the realities of living with your condition,
At best they will then be compassionate
But
- they may just pull a face and not know what to say
- they may change the subject fast
- they may say nothing
- they may not believe you
At best they will then be compassionate
But
- they may just pull a face and not know what to say
- they may change the subject fast
- they may say nothing
- they may not believe you
It can feel very lonely
It can feel like no-one else understands what it feels like for you - and some days this will be true
It can be very frustrating and hard
But there will be people who genuinely care and are truly compassionate too
It can feel like no-one else understands what it feels like for you - and some days this will be true
It can be very frustrating and hard
But there will be people who genuinely care and are truly compassionate too
Some days you will choose to something that you know may make you sick tomorrow
This trade-off can be well worth it if you have a joyous fantastic, memorable, or interesting or rewarding experience as a result
Do not do the thing if it's not likely to do good for you or others
This trade-off can be well worth it if you have a joyous fantastic, memorable, or interesting or rewarding experience as a result
Do not do the thing if it's not likely to do good for you or others
There WILL be good days, it's not all bad
There will be days when you feel great, when your illness has little impact on you, when you can get a lot done, when your pain and frustration are less
Days which are wonderful, joyous, fun, happy, amazing, insightful, full of love
There will be days when you feel great, when your illness has little impact on you, when you can get a lot done, when your pain and frustration are less
Days which are wonderful, joyous, fun, happy, amazing, insightful, full of love
You are stronger than you know, but your strength also has limits
Treat yourself with kindness and compassion
Know that your illness may limit you but you are not broken
It will sometimes be hard, but it's possible to have a good life within limits
Treat yourself with kindness and compassion
Know that your illness may limit you but you are not broken
It will sometimes be hard, but it's possible to have a good life within limits
