Life with a chronic illness is like an invasion by a foreign army. Your body turns traitor and sides with the conqueror.
It betrays you and exposes you to torture by the enemy:
– Loss of appetite
But, the army continues to invade – tiredness, loss of appetite and pain persist and intensify.
A SIMPLE GUIDE ABOUT LIFE WITH A CHRONIC CONDITION
A regular blood test shows you have a chronic condition – with a long, unpronounceable name.
Shock and terror battle for victory. All you can think about is what your life with this chronic disease will be like.
Crazy thoughts lightning flash through your mind.
- Who will look after my kids?
- Who will ever love them as much as I do?
- I can’t die and leave them alone. They need me.
Is this the story of the diagnosis of your chronic illness? Just know that you are not alone.
SOME FACTS ABOUT CHRONIC ILLNESS
A chronic condition is a medical condition which has symptoms that last more than three months.
According to the National Council of Health, nearly 50% of Americans have at least one chronic illness.
Approximately, 161 million people are currently struggling with fears and frustrations of having a chronic illness.
Keep reading to find out:
- Steps to take straight after your diagnosis
- The importance of your medical team
- Vital questions to ask your doctor
- The two values essential to cope with life with a chronic disease
- How to find, grow and enjoy a strong support network
Ready? Let’s dive in.
LIFE WITH A CHRONIC CONDITION
When you’ve just been diagnosed with a chronic illness, you may find yourself desperate for a way to tackle it head-on.
Here’s a kind of roadmap of action steps to move you from shock to understanding of your new health reality.
1. START A JOURNAL
A simple way to help you during this emotional rollercoaster is to start a journal.
Let me explain the link to your chronic illness
When you first hear the terrifying news that you have an incurable but not a terminal illness, your powerful imagination enslaves you. It is the sports car that takes you on a crazy high-speed ride from one catastrophe to another.
This is where journaling plays a vital role. It gives you the chance to spew out your uncensored fears.
You have a private space to give in to self – pity, to rant and rave at the unfairness of it, to rage at God for this ‘ punishment ’ and to beg and plead with Him for mercy.
University of Texas psychologist and researcher James Pennebaker believes that journalling yields many health benefits:
….writing about stressful events helps you come to terms with them, acting as a stress management tool, thus reducing the impact of
these stressors on your physical health.
Journaling is cathartic as it gives you an emotional release and invites introspection. The Oxford Dictionary defines it as:
the process of releasing, and thereby providing relief from, strong or repressed emotions.
Over time, the act of writing in your journal paves the way to create a new life even with the horrid chronic illness.
It builds and strengthens the values you need to cope with your chronic life sentence.
2. SKIP INTERNET RESEARCH
When you’ve just been diagnosed with a chronic condition, the internet is like a drug you can’t stay away from.
In a frenzy, you haunt Google in the hope of finding a cure to end this nightmare.
I know. I did this too. But you get sucked in by the promise of something …. anything …. that offers you an out from the monster that has snatched your life away.
Then you discover horror stories of people who have your illness …. You quake and tremble in fear of what the future holds for you.
The best tip I can give you is to stay away from the internet until you are stronger and better able to cope.
3. BUILD YOUR OWN MEDICAL SUPPORT TEAM
The ideal person would be your family GP. He would have bonded with you before life hurled the chronic life sentence at you.
But, you may find that you need more skilled and specialized care than your GP can give you.
Over time, create a network of medical professionals you can confidently entrust with your treatment.
You want to feel that they’re on your side no matter what. You should never be filled with fear and doubt about their treatment plans for you.
This may take time and trial and error but do it. Your life is at stake, so why not doctor hop until you find one that gels with you?
4. ASK QUESTIONS ABOUT YOUR CHRONIC CONDITION
Dr. Ted Epperly, a clinical professor of family medicine at the University of Washington School of Medicine says:
It’s important to take an active role when talking with your physician… Asking questions is one of the best ways to ensure you and your doctor are on the same page.
Set some ground rules with your medical team. You should be:
– Made aware of your condition
– the ups and downs
– Told of new treatments for your condition
– Notified also of any experimental treatments
- How serious is my chronic condition?
- Is it terminal?
- What are the treatment options for this disease?
- What is the treatment plan for me?
- Why have you decided on this treatment plan?
- What are the side effects of the medications?
- What are the likely causes of the condition?
- What symptoms can I expect in the future?
- What can I do to help my body fight the condition better?
- Am I going to die of this condition?
- What is my lifespan?
ESSENTIAL VALUES TO COPE WITH LIFE WITH A CHRONIC ILLNESS
What did you do when you heard your diagnosis?
Went into denial, right?
Then you asked for a second opinion and a third and perhaps even a fourth.
But the diagnosis didn’t change, did it?
What is important now is to create a toolkit to help you cope with this dreaded disease. TTwo values that open positive doors to living with a chronic illness are acceptance and courage. Click To Tweet
1. ACCEPTANCE OF LIFE WITH A CHRONIC ILLNESS
Only when you accept what is real can you live with it in peace and happiness. The alternative is a struggle that will never end because it is a struggle with the unreal
The blood tests have spoken. You’ve been sentenced to life with a chronic illness.
Now, you have to get on with the business of living. Sounds really cruel, doesn’t it?
How, you might ask, how do I do that when all the dreams and hopes I had have been stolen from?
The key is to accept your diagnosis. Acceptance is like a handshake.
You shake hands when you meet new people, don’t you? Then you move on to another person or group.
This is what you need to do. Shake the hand of your condition, greet it and move on to living with it.
You may be fooled into thinking that acceptance means giving up. It is actually the opposite of denial.
Acceptance of your chronic illness brings with it a welcome guest – understanding.
Hard work follows acceptance. You will have to take stock of what you can do and what you can no longer do.Build a new foundation to base your life on. A new, sturdy structure that can withstand the hurricane of your chronic disease. Click To Tweet
Check out Erin Migdol’s post 23 Spoonie Hacks That Can Make Life With Chronic Illness Way Easier for tips to help you manage your life with a chronic illness.
2. COURAGE IN THE FACE OF LIFE WITH A CHRONIC ILLNESS
In My ‘Courage’ While Facing Illness Isn’t a Personality Trait, Cecilia Baldwin redefines courage.
She says it is a powerful skill you can learn just like any other. Her process to build your courage is:
- Identify the fear
- Imagine your fear becoming a reality
- Accept that you can’t control it
- Identify what you can control and embrace that.
The result is a shift from a can’t to can-do mindset.
You may need help with some tasks but you will get to a point where you want to take charge of a few things in your life:
The great problem is how to do them when getting out of bed is on the same level of difficulty as running a marathon.Get inspiration from the blogs of other chronic illness bloggers at www.chronicillnessblogers.com. See how they deal with life with a chronic condition. Click To Tweet
Here are two blog posts that offer a few practical solutions to getting household chores done:
Donna of fedupwithfatigue.com has an amazing article in 20 helpful tips for cleaning & organizing when you’re chronically ill.
3. BUILD A STRONG SUPPORT SYSTEM
A great support network is essential if you live with a chronic condition.
4. JOIN A SUPPORT GROUP
This is one of the most important steps to take in your chronic illness journey.
There are Facebook groups and Online Forums where you can also get great advice from other chronic ailment patients.
Articles of interest and guest speakers may be featured to educate you further about your medical problem.
The payoff off for you will be tried and tested tips to make life more bearable.
5. PRACTICAL SUPPORT
Here’s the thing – a chronic illness is incurable. When you’ve just been diagnosed, you may still continue living as you used to. But, over time your health degenerates.
That’s when your web of helpers and carers need to step up to the plate.
You will have to take an active role in creating your tribe to give you the practical support you need.
First, include your immediate family and friends. Educate them about your disease and the prognosis. Be open about the impact of your illness on routine activities and ask for help.
For example, explain that your pain medication makes it impossible to drive. Ask for rides to and from medical appointments.
You may need to extend the circle to include parents of your kids’ friends or schoolmates to help with transport to and from school and after-school activities when you can’t.
Household chores like laundry and cleaning have to be done. Again, don’t feel embarrassed to give reasons why you can’t do this or that task.
Cooking also has to be done daily. Perhaps, your partner can do it on the weekends. But meals still have to be prepared so try to get help with preparing meals to stock up your freezer.
Loved ones could also just draw up a rota to prepare dinners for your family. You could also make an arrangement with a neighbor to make a check on you every day.
6. SOCIAL SUPPORT
Ask close friends to keep in touch with you. Tell them if you feel like socializing and point out your limitations – has to be for a short period as you tire easily. Ensure they are aware of your condition and steps to take in an emergency.
7. SPIRITUAL SUPPORT
Whatever your faith, spiritual support is needed to lift you on your tough days.
Seek comfort in spiritual books and hymns and visits to your place of worship. Turning to God gives you solace and comfort. It also supercharges you so you can go on and not quit.
Chanting a simple prayer in times of pain offers twin benefits – distraction and blessing.
Your support network makes this daily nightmare bearable.
Life with a chronic illness is hard. But how you deal with it makes all the difference.
Let’s recap on what you need to do if you’ve just been diagnosed with a chronic condition
– Make your journal your confidant
– Don’t haunt Google
– Build a strong medical team
– Learn about your chronic condition by asking relevant questions
– Grow values like acceptance and courage
– Create your support tribe
This quotation sums up the mindset of a chronic illness warrior:
Life isn’t about waiting for the storm to pass. It’s about learning how
to dance in the rain.
Do you have any tips to share on how to cope with life with a chronic disorder?
Share them in the comments below.