Years ago I was in the emergency room with a friend. The nurse making the triage was assessing an elderly lady.
“Do you have any chronic illness?”
“Chronic? No, I don’t.”
“How did you break your arm? Did you fall?”
“No. I barely moved, and it broke. I have osteoporosis.”
“You said you don’t have chronic illnesses.”
“I don’t. I have diabetes, heart problems, arthritis…”
“You said you don’t have chronic illnesses.”
“I don’t have chronic. I have what I told you and some more, but you interrupted me instead of listening.”
The protagonists in this story suffered (both) of a long-term human condition called “misunderstanding.”
You may be surprised how many of us and how often we suffer from it.
Now, let’s make things clearer and see 14 challenges you might face if you suffer from a chronic disease.
I guess you know your pains. However, this article aims to help you be aware of the fact that what is happening to you is not your fault. There is nothing about you that makes you deserving of your suffering.
There is nothing about you that makes you deserving of your suffering.
#1 Others don’t understand what you’re going through.
Long-term conditions are rarely an emergency.
The sufferers carry their pain in silence, unseen and unnoticed. Because of these two facts, if you suffer from a long-term condition, you might not be taken seriously or believed. If it doesn’t bleed, it must be a bloody lie…or it must be something in the mind…or laziness…or seeking attention.
Those who don’t experience what you experience, don’t (really) understand you. You know how it goes! You can’t know what you don’t know.
I suffer from arthrosis of the knee (gonarthrosis). For some that have the arthrosis localized in other joints, my condition doesn’t seem that bad. You can’t know what you don’t know.
The most frustrating part about chronic diseases, apart from the physical symptoms, it’s the fact that it’s hard to find support. Even some professionals, trained to deal with your condition, don’t validate what you experience.
Being sent from one professional to another and back again, can have a negative impact on your self-esteem.
One of the ways we form beliefs is hearing the same thing from different sources. So, if four professionals dismiss or disregard your symptoms, you start believing they are right; lose the confidence in what your body is telling you.
I don’t remember a time when my knees didn’t hurt. In school, my PA teaches made us walk squats…my knees hurt so bad! I said nothing believing that was the point of it, to hurt. “It must be a torture device.”
With a long-term condition the saying “no pain, no gain” is nonsense. When there is pain, it’s a sign that you should stop; but don’t expect from those around you to understand that.
#2 Feeling guilty.
Most people suffering from a chronic disease feel guilty because they can’t (anymore) provide for their loved ones the support or companion they would like to offer.
My husband and I used to bike together. Now… that’s in the past. Luckily for me, I was the one pushing him. If it were the other way around, I would feel guilty that we can’t do it anymore.
Even though your illness is not your fault, you might feel guilty for the loss of dreams and aspirations you had together that you can’t purse.
Sharing positive things with your loved ones is one of the biggest pleasures we have in life. So, if you too feel guilty sometimes for being ill, it’s understandable.
Yet, remember that those who love you don’t want to add to your pain. Plus, they like to be useful to you.
Certain conditions are unintended gifts from your genes.
That kind of inheritance is hard to accept because it feels so definitive and impossible to overcome.
#4 Secondary gains.
When life takes something from you, gives you something in return or, at least a compensation.
Sometimes we can get too attached to those compensations. They can become an obstacle to search for ways to improve your health.
Most times we are not aware of these compensations and how they can trick us into accepting the status quo.
#5 Identity crisis
A long-term condition forces you to reevaluate your abilities and redefine, again and again, who you are.
Many sufferers deal more comfortable with the physical pains of the illness than the emotional pains caused by it.
Life is constantly changing. Yet, most changes come gradually, and you have enough time to adapt.
A chronic disease doesn’t always leave you the time to adjust or takes away any chance to redesign your life as you like.
That may cause people to fall into a depression which can become an added long-term condition.
An identity crisis makes you feel confused.
Whatever challenges you to get out of the borders of who you believed you are, can create an identity crisis because it brings up the question: “If I’m not that person, who am I?”
Changes in your circumstances can crash your sense of self; you don’t know who you are anymore, you don’t know how to be.
Those are difficult times but have a simple solution. Come back to the question: who am I?
Answer in detail and notice that in most aspects you are the same. Just because one element of your identity has changed doesn’t mean that the essence of who you are has disappeared.
To prevent getting stuck into self-confusion (an identity crisis), always regard yourself as a five-dimensional being: soul, abilities, behaviors, mind, and body.
Whichever dimension of yourself is suffering a change it’s pulled back into the confidence zone by the other four.
Remember that you are not just one dimension. You are never only one thing, a doctor, a cleaner, a stay at home parent, an engineer, or a writer, but much more than that.
Faced with an identity crisis, don’t dream to get back to who you were, but aspire to build and define the new you. Accept yourself as you are at every given moment in time because that is your foundation to thrive in life.
The more you linger in regrets, sorrows, and confusion, the less time you have to build your future.
The human is a social creature. If your connection to others is severed, can feel like being lost in a forest of dead trees.
A chronic disease can cause you to become isolated and then, lonely.
Listen, your illness is not unique; others have it. Therefore, others can help you deal with it more manageable.
With the help of the internet, nowadays, you have at your disposal means to ensure you don’t become isolated.
If you didn’t join until now a support group for your condition, I encourage to do it.
Did you know some studies suggest that 1 in 3 people suffer from a chronic health issue? You are not alone. You do not have to suffer in silence, unknown and unnoticed.
#7 Feeling defeated.
Because a chronic illness is, by definition incurable or constantly recurring, you might feel defeated by it.
Our lives are moving forward from one cycle to the next.
Living with a chronic illness doesn’t defeat you; it’s only ending one cycle and starts a new one.
The human is highly adaptable. We adapt to happiness and wealth, but also to less favorable events and circumstances. You can face and adapt to almost everything that comes your way.
Give yourself the time, the chance and the opportunity to adapt to your new life, and you’ll never again feel defeated.
#8 Everyone’s an expert in your illness
In a Star Trek episode, Worf (Klingon) was helping a woman to give birth. He got frustrated with her for not “delivering” the baby fast and easy.
“Worf, have you done this before?” she asked through the pain.
“Yes, in the simulation, but there, things were more orderly.”
Others tend to tell you how is acceptable for you to deal with your illness. Not only that but also give you unsolicited advice about how to cure your condition.
“Do you suffer from chronic pain? Drink (that) herbal tea. It works wonderfully. It’s impossible not to cure you.”
There is nothing malicious in their advice. Those around you genuinely try to help. Nevertheless, at times can be quite annoying; especially when they insist whit some voodoo treatments and don’t know anything about your illness.
And that is the case most times – people don’t know what you’re dealing with- as I’ve said: “you don’t know what you don’t know”.
#9 Feeling inferior.
Suffering from a long-term condition can make you feel inferior to others because you (suddenly) discover that many things you’ve done brilliantly in the past can’t do anymore.
However, you have the capacity to adapt. You can’t do the same things, but you can do other things. Adaptation means learning. A chronic disease creates necessities you didn’t have before (necessity is the mother of invention and learning).
#10 Danger of becoming addicted
The pain threshold is different from person to person. If yous is low, you might contemplate the prospect of taking painkillers.
Unfortunately, you can’t, always, trust your doctor.
In the past doctors believed that opioids are safe to take. Now, we know that many people got addicted and their suffering tripled because of it.
There are now more people addicted to prescription medication than to street drugs.
So, pay close attention to your medication. Check and check and check that is safe for you to take it.
It’s hard enough to live with a long-term condition, let’s not add a second one to it.
#11 Things seem to pile up
The unexpected is expected to happen. That is life. However, because of your chronic illness, it might take you longer to desensitize yourself to new discomforts. Everything feels enormous and hard to overcome.
A long-term condition can make you fearful, and you may give a giant meaning to any new symptom.
#12 Your carer becoming a new issue to solve.
We’ll call “a carer” in this circumstance any person that is around you and helps you in some way to deal with your condition.
Don’t you feel you could bear your pains easier than the pains of those you love? Your loved ones are no different.
Some of your loved ones might internalize your suffering and act like is their suffering. Then, you have two people to attend to: you and the person who supposed to help you.
One of my neighbors had a stroke. Her husband suffer so much for what happened to her, that four days later, he had a heart attack and died.
That is an extreme case, and it doesn’t happen too often. But often it happens for carers to empathize so much with those who care for, that the illness becomes theirs. In that case, their help can be a burden for you.
In other cases, out of empathy, the carer, leaves and delegate all the responsibilities to individuals unprepared to take them on (the children, for example).
#13 The carer takes over your control
I know many spouses that micromanage the illness of their other half.
With all the good intentions, that can be overwhelming and makes you feel worse.
You already lost control in some areas of your life, and your carer takes away the little control you feel you could have.
As difficult as that could be for you, understand that’s your loved one’s way to face the situation.
Both these situations (#12 and #13) have the same solution.
First, educate your loved one about your illness (keep some details to yourself).
Second, let them know how much you appreciate their help.
And third, tell them exactly what you need and what you don’t need.
Be assertive about it. Your loved one needs that from you because assertiveness, not only makes things clear but also shows that you are strong enough to deal with your illness as you say you want to do it.
#14 The loss of dreams.
One of the most important secrets to a happy life is to have dreams. A chronic disease kills some of your dreams. Therefore, that loss can be difficult to swallow.
Yet, your dreams are born from your imagination, and as long as your mind can imagine things, you can make new ones. Never stop dreaming!
Now, that you have this information, the thing that I would like for you to remember the most is this:
A long-term condition is not the end of your life, but the beginning of a different, a new life.
“I’m awake now! Life is beautiful! Life has meaning!” said to me many clients of mine after getting ill. And another thing they say is: “now is the first time in my life that I feel alive.”
How do you feel about it? Leave a comment below the article and let’s talk about it.
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