«
»

Top

How To Explain Your Chronic Condition To Loved Ones

Dec 18, 2018

How To Explain Your Chronic Condition To Loved Ones

Amy Stenehjem, a doctor with a chronic disease, recently published an article in the Huffington Post. Unable to leave her home for five years, she wants to raise awareness to as many people as possible of the daily difficulties she and others dealing with chronic conditions face as a result of their conditions. She lists 12 things a person should know when it comes to those who are dealing with a chronic disease.

conversation

Perhaps some of these points will resonate with you and will allow you the opportunity to educate your loved ones more on what you are going through. We hope this article helps you and your loved ones mutually, and for that reason we have chosen to transcribe this article for your reading.

A chronic disease is "an illness, condition, or injury that can affect someone for a lifetime and generally is not able to be cured, even if the patient may go into remission in certain cases. Its severity varies, some people are abe to work and live a "normal" and active life, while others are more negatively affected and often are forced to become more isolated. Many people with chronic diseases have no visible symptoms and the seriousness of the condition is sometimes not noticeable, which can cause others to misunderstand or make assumptions about the person and can also lead to lack of support from doctors, family, and/or colleagues."

Here is the list of points that Amy shared:

1. No one wants to be sick.

As a doctor, I have never met a patient who was thankful for their chronic disease. It is the mere opposite... most were very active individuals, and suddenly found themselves with an injury, condition, or disease and began the search for treatments to alleviate insurmountable symptoms.

2. Many doctors do not understand chronic diseases.

For years, it was common in the medical community to beleive that some of these illnesses were the result of depression or an anxiety disorder and that seeking mental health would be the only effective treatment.

But despite many medical advances, many doctors refuse to keep up with the latest developments and do not know how to deal with these patients. At the risk of worsening their symptoms, some patients therefore lose valuable time looking for a doctor who will listen to them, correctly diagnose them, and prescribe appropriate treatment.

3. Not being able to go to work is not the same as a vacation.

Being unable to work because of a chronic illness is not a pleasure. It is a daily struggle to perform the simplest tasks, such as getting out of bed, getting dressed, cooking, etc. Illnesses often force patients to isolate themselves and stay inside, besides attending medical appointments, because they are too weak to set foot outside.

You've probably been stuck at home because of bad weather or a bad flu. Remember the frustration you felt because you couldn't get out of the house. Now, imagine if you were stuck at home for weeks or even months. That would be frustrating, wouldn't it?

4. Having a chronic illness can trigger many emotions.

A chronic condition can alter the biochemical composition of the areas of the brain that control one's emotions. There are also other factors that can influence a person's mood and make them depressed or more worried:

- waiting for or seeking a diagnosis

- inability to work and the feeling of not being effective

- changes in the way the couple/family operates

- a loss of social interaction that leads to isolation

- financial stress

- the constant struggle with, and battle against, symptoms and trying to perform simple daily tasks

- Chronic diseases often create a sense of emptiness. It is not unusual for patients to go through all stages of grief (denial, anger, bargaining, depression and acceptance). They are mourning the loss of their lives as they knew it before and the life now that they are forced to have to endure.

The feeling of isolation is very strong; even if the patient wants to interact socially, his symptoms can prevent him from doing so. He then finds himself unable to make a phone call, write an email, or post a message on Facebook.

5. The symptoms of a chronic disease are very complex.

Symptoms vary according to the disease, and patients may have one or more symptoms at a time. Here is a non-exhaustive list: intense fatigue, pain, headache, inability to concentrate, nausea, and dizziness.

There is nothing unusual about these symptoms appearing and disappearing regularly, sometimes even within an hour. Planning activities in advance becomes a real headache. A "good day" for a patient with a chronic disease could be considered a "bad day" for someone else.

6. The exhaustion that results from a chronic disease is real.

Exhaustion is a common symptom that can be very severe, and even debilitating. A common activity or a more important event, such as Christmas and New Year's Eve celebrations, can trigger one's mental and/or physical exhaustion. Patients then have to "pay the price" and need several days or even several weeks to recover.

They, therefore, need a lot of rest and often cancel outings at the last minute. This does not mean that they are lazy or that they are isolating themselves because of choice. When exhaustion strikes, he or she has no choice but to stay home and rest. It is as if the body hits a wall and cannot go any further, no matter how much effort. If you want to better understand the exhaustion one with a chronic disease experiences, I invite you to read the article on "the spoon theory".

You may have been in bed for a few days after the flu or undergoing a surgery. Think back to how you felt: you could barely get out of bed and simple gestures exhausted you. Imagine that you feel this every day, constantly, for months or years.

7. Pain is a common symptom of chronic diseases.

Very often conditions are accompanied by severe pain, which can be in the form of headaches, arthritis, muscle, lumbar, abd/or cervical pain.

8. Not thinking clearly is extremely frustrating.

It is a complicated symptom to describe. Mental fog is a common cognitive dysfunction, and it can manifest itself in different ways: it is difficult to find words, difficult to concentrate, and/or difficult to remember things. People who suffer from it know what they want to say, but often cannot find the right words.

9. The risk of infection is higher.

The immune system can be weakend in those dealing with a chronic disease. Instead of tackling infections, the immune system wastes its time time and energy fighting against the patient's own body organs, joints, nerves, and/or muscles. Many people with these disorders take medication to regulate this problem and must avoid contact with those who are sick because a common cold can turn into a serious infection.

10. Certains foods can make symptoms worse.

Some foods can make the symptoms worse. The most common culprits are gluten, dairy products, sugar, soya, yeast, alcohol and processed foods. These triggering foods can cause inflammation, which in turn causes an increase in symptoms. These can last for hours, days or even weeks.

And because all these foods are part of our daily diet, it is often difficult to identify those responsible. No longer integrating them into our plates becomes a challenge.

11. The sense of smell is more developed.

Some odors, such as perfumes, household products, or cigarettes, can trigger migraines, mental fog, nausea, and other symptoms. Underdosed versions of drugs used for cancer treatments are sometimes prescribed. This sensitivity to odors is similar to that observed in pregnant women or patients treated with chemotherapy.

12. Living with a chronic disease requires a lot of effort.

Individuals diagnosed with chronic diseases need to be disciplined in making sure they get a good night's rest, avoid triggers, and take medication at the right time as to not worsen their medical condition. These individuals desire to feel" normal", perhaps by eating a slice of pizza or staying up late, and is understandable, even if they will "pay for it" later.

Despite this struggle punctuated by suffering, isolation, and debilitating symptoms, those with chronic diseases (and their caregivers) continue the fight. They struggle daily to better understand their bodies and accomplish things others take for granted. Those around them - family, friends, and colleagues - rarely understand the difficulties they face, and, therefore, struggle to be able to suport and help them effectively.

 

This post was originally published on The Mighty and reprinted by the Canadian HuffPost.

 

Comments

on 12/26/18

Thank you, Amy, for an interesting and detailed article, which gives great tips for those who have a chronic disease!

All your tips are so well explained and give so much advice to those who are faced with chronic ill-health.

I am grateful I am still independent after 45 years of epilepsy, but knowing others are worse off than myself I am still able to support and give others love and advice when required.

I will always live by the advice my Mom gave me several years' ago, which was to live one day at a time, and remember, 'there is always light at the end of the tunnel!' 

on 1/1/19

Thank you Amy for your informative knowledgeable, and detailed article and advice and helpful suggestions about chronic conditions,and coping skills.

There is nothing worse than one day blending into another day, another week, another month and year and so on not wanting to do anything, exhausting the love ones around you because they don’t know what else they can do to snap you out of the rut one is in.

The delusion the conditions leads one, you have a good day or so which gives you hope you are on the road to recovery,then smack you are back to where you started, one step forward and two steps back, your body is telling you to slow down,over a period of time slowly some improvements are made, as Lesmal said one day at a time. Don’t run until you can walk.

on 2/6/19

Thank you Amy. Your article is very useful to help explain things to others. I really don't think there is any issue you missed. Keep smiling. Anyes

on 4/15/19

Well Doc It's like this.....?????????????????????????

Hi Amy  I must say that you're article on AS has 'hit the nail on the head' well and truly. As a Doctor/Patient you understand what I and millions of others have been going through for years, 20 in my case.  It wasn't until I was reffered to the Royal Hospital for Rheumatic Diseases in Bath, UK. (What an absolutles brilliant bunch of professionals???) that I was diagnosed with A.S., and then the treatment began. I'm in a far better place now than I was 20 years ago.

Don't be afraid to talk about your pain and how it debilitates you. Make people understand that pain may be invisable but is very much a REAL problem that you live with every single day.

Many Thanks Amy for a really enlightening article.

Reagrds   Richard

You will also like

Damien of Carenity's thesis: plasticity, or when the brain reeducates itself

Damien of Carenity's thesis: plasticity, or when the brain reeducates itself

Read the article
How to travel with a disability?

How to travel with a disability?

Read the article
The founder of Carenity answers our questions

The founder of Carenity answers our questions

Read the article
Chronic fatigue: patients' experiences and solutions

Chronic fatigue: patients' experiences and solutions

Read the article