Information for family and friends of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia, Long COVID and other conditions with debilitating fatigue
Arthritis, Pain Support & ME/CFS ACT have utilised the ME/CFS and Fibromyalgia program first created by Bruce Campbell of which our ‘For Family and Friend’s’ Booklet is a part of, and we acknowledge this original work. This publication is based on the book Managing Chronic Fatigue Syndrome and Fibromyalgia: Feel Better, Take Charge, Regain Hope by Bruce Campbell and is reproduced with permission by Arthritis, Pain Support & ME/CFS ACT
In 2024 we have updated this booklet to cover all conditions that result in Post Exertional Malaise including ME/CFS, Long COVID and other post-viral conditions. The information below is available in a hard copy booklet available from Arthritis, Pain Support & ME/CFS free of charge for people living in the ACT and region
Disclaimer: Information and materials included in this booklet are for general use only. They are not intended to replace medical advice from your GP, specialist, or other qualified professional. Arthritis, Pain Support & ME/CFS ACT does not recommend or endorse any specific treatment, therapy, practitioner, or service mentioned in this booklet and you are urged to make your own inquiries before taking any action. Arthritis, Pain Support & ME/CFS ACT accepts no responsibility for any activity or treatment undertaken by readers of this booklet.
What happens when you suffering from debilitating fatigue
When someone you know develops symptoms of debilitating fatigue you may at first think that the problem is a lingering short-term illness. But at some point, you realise that your loved one has entered a new realm: the world of chronic illness. Instead of resuming familiar patterns and routines, the person with debilitating fatigue condition will be faced with the prospect of adjusting to a different life. Their illness will present you with challenges as well.
Here are some of the issues often faced by family members of people with debilitating fatigue conditions (some also apply to friends).
- extra household tasks
- financial strains
- caregiving responsibilities
- strained relationships
- worry and uncertainty about the
- uncertainty about how to help the person who is
- resentment and frustration
- grief, sadness, and depression
- increased stress
- sexual difficulties
- loss of companionship
- strained communication
- less socialising
- extra parenting responsibilities
A. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,
Fibromyalgia and Long COVID
• Overview
The most common cause of debilitating fatigue are the conditions
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/
CFS), Fibromyalgia (FM) and more recently the onset of Long COVID.
These conditions are now widely recognized as real illnesses, not
psychological problems. Diagnostic criteria have been established
for ME/CFS and FM while there are currently no standard diagnostic
criteria for Long COVID.
ME/CFS, FM and Long COVID are common. Research suggests that
there are probably more than 250,000 with CFS in Australia. Estimates
of the prevalence of FM vary, but there are probably at least one
million people in Australia with FM. Whilst there is no complete data,
it is estimated that up to one third of people infected with COVID-19
develop Long COVID.
(The above estimates were referenced from Emerge Australia, Fibromyalgia
Australia and the Australian Institute of Health and Welfare respectively)
• Symptoms
The average person with one of these debilitating fatigue conditions
has moderate to severe symptoms and experiences a reduction
in activity level of between 50% and 85%. These conditions are
characterised by the presence of several to many symptoms.
One way of understanding debilitating fatigue is the illustration of a
phone battery. A well person will wake with a battery between 90% and
100% and as they go through the day the battery will reduce to 40% or
50% depending on their level of activity. Someone with a debilitating
fatigue condition will wake with as little as 5 or 10% or none as their
battery doesn’t charge overnight like it is meant to. This means that just
getting out of bed and showering takes all their battery stock.
The central symptom of these conditions is the debilitating fatigue that
is often experienced as deep exhaustion. Other prominent symptoms
include pain, sleep that is not refreshing and cognitive problems
including confusion, difficulty concentrating, fumbling for words and
lapses in short-term memory.
Other symptoms that often appear include headaches, low grade
fevers, sore throat, tender lymph nodes, anxiety, and depression,
ringing in the ears, dizziness, abdominal pain (gas, bloating, periods of
diarrhea and/or constipation), allergies and rashes, sensitivity to light
and sound, abnormal temperature sensations such as chills or night
sweats, weight changes and intolerance of alcohol.
Another prominent symptom (particularly of Fibromyalgia) is
widespread pain, jaw pain, and dry eyes and mouth.
Long COVID affects each person differently. Some have ongoing
symptoms from organ damage, others will meet the diagnostic criteria
for ME/CFS or a related condition. The most commonly reported
symptoms of post-COVID-19 syndrome include debilitating fatigue,
fever, and lung (respiratory) symptoms, including difficulty breathing or
shortness of breath and a cough.
People diagnosed with either CFS or FM are commonly found to have
other conditions as well, such as irritable bowel syndrome, food and
chemical sensitivities, sleep disorders (for example, apnea and restless
legs syndrome), myofascial pain and thyroid conditions. Long COVID
symptoms may resemble or overlap with both ME/CFS and FM. The
most common additional medical problems are still being determined.
Below is the ME/CFS and FM Rating Scale.
It’s good to know where your family member or friend rate themselves
on this scale.
100 Fully recovered. Normal activity level with no symptoms.
90 Normal activities with mild symptoms at times.
80 Near normal activity level with some symptoms.
70 Able to work full time but with difficulty. Mostly mild symptoms.
60 Able to do about 6-7 hours work a day. Mostly mild to moderate
symptoms.
50 Able to do about 4-5 hours a day of work or similar activity at
home. Daily rests required. Symptoms mostly moderate.
40 Able to leave house every day. Moderate symptoms on average.
Able to do 3-4 hours a day of work or activity like housework,
shopping, using computer.
30 Able to leave house several times a week. Moderate to severe
symptoms much of the time. Able to do about 2 hours a day of
work at home or activity like housework, shopping, using computer.
20 Able to leave house once or twice a week. Moderate to severe
symptoms. Able to concentrate for 1 hour or less per day.
10 Mostly bedridden. Severe symptoms.
0 Bedridden constantly. Unable to care for self.
• Treatments and prognosis
Because there is so far no cure for CFS, FM or Long COVID, treatment
focuses on controlling symptoms and improving quality of life.
Approaches include medications, alternative treatments, and self-help
measures.
Medications are often used for improving sleep and controlling pain,
though their effectiveness varies greatly from person to person. Since
no medication is consistently effective, treatment usually consists of
a process of trial and error to find what works for an individual person.
People can usually improve, or at least control symptoms, by adjusting
their activity level, reducing stress, and improving sleep.
For most people, CFS and FM are long-term conditions. as no cure
has been developed so far. A few people recover, some people may
improve over time, while others remain stable and a few decline.
Recovery rates for long COVID are still to be determined.
• Effects
Chronic illness is a challenge to manage because its effects are so
comprehensive. Debilitating fatigue touch every aspect of life: a
person’s ability to work, relationships, emotions, dreams for the future
and their sense of who they are.
Complicating the challenge, there is an interaction between illness
and other parts of life. Debilitating fatigue restricts a person’s life, but,
in turn, can be worsened by how a person lives. For example, illness
puts limits on a person’s activity level. But, if a person with debilitating
fatigue does more than their body can tolerate, overactivity causes a
higher level of symptoms.
• Interactions of illness and other factors
The same pattern of reciprocal effects is true for other elements as
well, such as the relationship between illness and stress. Living with
symptoms on a daily basis is inherently stressful. In addition, illness
often creates new stress because of factors such as financial pressure,
strained relationships, and uncertainty about the future. In all these
ways, illness increases stress.
We also know that stress often worsens symptoms. People with
debilitating fatigue are very stress sensitive, so that even moderate
amounts of stress can greatly intensify symptoms, creating a feedback
loop in which symptoms and a patient’s reaction to them intensify one
another.
Similarly, there is a two-way relationship between illness and feelings.
Emotions like worry, anger, depression, and grief are normal reactions
to chronic illness, understandable responses to a situation in which life
is disrupted and routine replaced with uncertainty.
Most people experience a vicious cycle, in which illness intensifies
emotions and then emotions, in turn, intensify symptoms. For example,
people who become depressed because of their illness have a lower
threshold for pain. Also, pain can be intensified by anger, because anger
usually creates muscle tension.
In summary, debilitating fatigue have comprehensive effects, touching
many parts of a person’s life. They are much more than simple medical
problems. A plan for managing them has to address all its effects, not
just symptoms.
B. Your situation
Serious illness has profound effects on family and friends, not just
the person who is ill. Just as each person with debilitating fatigue is
different and needs to develop an individualized self-management
plan, so, too, do you need to tailor your response to your unique
circumstances.
• Factors shaping your situation
Probably the most important factor shaping your situation is the severity
of your loved one’s medical problems. The amount of disruption to your
life and the amount of adaptation required of you will be dictated by the
number and seriousness of the health issues faced by your loved one
and by your relationship to them.
For those families in which the person’s life is touched only lightly by
a friend or loved one with a debilitating fatigue condition and often
for friends, the adjustments may be relatively minor. When the illness
is severe, the stress can be great and the caregiving responsibilities
substantial.
A second important factor is your circumstances (age and health) and
the life stage of your family. If you are young and vigorous, your ability to
take care of a person with debilitating fatigue condition is different than
if you are older and perhaps dealing with your own health problems.
Likewise, the life stage of your family situation is important. If you have
school age children, they are a major responsibility. If your children are
grown, they may be sources of help.
A third significant aspect of your situation is your finances. This will
impact every family in different ways and may result in an impact on
housing, being able to meet medical costs and participating fully in the
community. These families often require support to manage all factors
of their financial and social commitments.
• Coping skills and attitude
Finally, your family’s ability to deal successfully with a family member
with a debilitating fatigue condition will be shaped by your coping
skills and attitude. The way a person and those around them conduct
their lives has a major impact on the family member and on everyone’s
quality of life. Your actions and those of the person with the condition
can change the effects of the condition and may even change the
course of the illness.
Living well with a debilitating fatigue condition requires a level of
management like that for other serious, long-term conditions, such as
diabetes that also take major, long-term lifestyle changes to control the
illness. Your actions and attitudes will have an important effect on your
loved one’s symptoms. By helping them adjust to their limits and by
working to create a stable and predictable environment with lowered
stress, you contribute to their wellbeing.
You may not be able to change the fact that someone in your life has
a debilitating fatigue condition but together you can learn new and
more effective ways to deal with the condition. Research stretching
back 40 years has proven that the people who do best living with
chronic conditions are those who believe in their ability to exercise
some control over the illness. These people do not deny that someone
is ill, nor do they hold unrealistic hopes for recovery, but they have
confidence they can find things to make their lives better.
Finally, there is one more factor that is important to living well with
long-term illness: attitude. The approach to living with chronic illness
that we have found helps people cope can be characterized as being at
the same time both realistic and optimistic. We call it acceptance with a
fighting spirit.
People with this attitude combine two apparently contradictory ideas.
On the one hand, they accept that the illness in their life is a long-term condition instead of living as if the person were well or searching
for a miracle cure to restore good health, people with this approach
acknowledge that their life has changed, possibly forever. At the same
time, they and their loved ones also have a fierce determination to
improve, and the conviction they can find ways to improve quality of life
through their own efforts.
In summary, good coping skills and a positive attitude can make a
significant difference to their condition and your quality of life.
2. Coping with the impacts of debilitating fatigue
conditions
The changes brought by the onset of a debilitating fatigue condition
are usually dramatic and far reaching. A person who used to be healthy
now has substantially less energy than before, has trouble thinking
clearly, and finds themselves easily overwhelmed by stress or even by
light and sound or the weather. This chapter describes the impacts of
these conditions, and strategies for addressing them.
A. Managing symptoms
There is so far no cure for either CFS, FM or Long COVID, but there are
many ways to alleviate the symptoms. While treatments don’t heal
these conditions, they can reduce pain and discomfort, bring greater
stability, and lessen psychological suffering. Most people treat their
symptoms using a combination of medications and life changes.
Since no medication is consistently effective in treating debilitating
fatigue conditions, we recommend that people firstly find a doctor or
set of health care providers who are willing to work with them to find
out what works in their individual situation.
It is also very important to understand that symptom levels are affected
by the actions of those around them. How a person lives with their
condition and how his or her family and friends act, will intensify or help
to alleviate the symptoms of the conditions.
B. Activity limits and pacing
A lot of debilitating fatigue conditions impose limits on people.
The severity of illness can vary greatly, but usually people function
somewhere between about 15% and 50% of normal. People with
debilitating fatigue usually do less around the house than when they
were healthy. They often reduce their hours at work or stop working altogether.
The limits brought by illness require many adaptations, both practical
and psychological. For many people, the bigger challenge is
psychological: accepting that life has changed and learning to see
life in a new way. This acceptance is not resignation, but rather an
acknowledgment of the need to live a different kind of life, one which
honours the limits imposed by illness.
In the words of one person in our program, ‘Getting well requires a shift
from trying to override your body’s signals to paying attention when
your body tells you to stop or slow down’. This process of accepting
limits and learning to live a different kind of life usually takes several
years.
In terms of practical adjustments, perhaps the single most important
strategy for controlling symptoms is for the person to adjust activity
level to fit the limits imposed by debilitating fatigue. We call this ‘living
within the energy envelope’ or pacing.
Rather than fighting the body, with repeated cycles of push and crash,
the person seeks to understand the body’s new requirements and to
live within them. Because it is not possible to do everything with limited
energy, they, family members and friends must choose those things
that are most important.
Family members and friends also have an important role to play in
helping the person to adapt to limitations. The first and most significant
is to honour the person’s limits, accepting that they can do less
than before and trying to do more than the body allows intensifies
symptoms. Another, as discussed in the next section, is to adjust the
family workload.
C. Adjusting family roles
Debilitating fatigue usually lead to a redistribution of household tasks:
cooking, cleaning, shopping, laundry, bill paying, etc. For those things
that are unable to be done or not in the same way as before, there are
two main options: reassigning and simplifying.
Reassigning means finding someone else to do part or all of a task that
used to be done. Probably the most common solution is for other family
members or friends to take over some or even many of the duties.
But there are other solutions as well.
If there are children living at home, they may contribute in various ways,
such as by keeping their rooms clean, helping with meal preparation
and doing their own laundry. Another solution used by some families is
to employ a cleaning service to take over housecleaning or to come in
occasionally.
Simplifying means continuing to do something, but in a less elaborate
or complete way. For example, you might clean house less often or
cook less complicated meals. Some people adopt new standards for
themselves. One person told us, with a smile, that she now views dust
as ‘something that protects my furniture’.
While accommodations to the person’s illness are often required, they
may be able to increase the amount of work done by changing how
they work. For example, several short periods of meal preparation with
a break in between may allow them to make dinner without intensifying
symptoms. The length of work periods may be increased by sitting
rather than standing.
Also, by spreading housework over a week rather than doing it all at
once, someone with debilitating fatigue can avoid the push and crash
syndrome. Finally, most people have good and bad times of day. It may
be possible to get more done and avoid a flare up of symptoms by
working during the good hours of the day.
D. Financial pressures
The financial effects of a family member with a debilitating fatigue
condition varies greatly. A few people who continued working while
their symptoms worsened, have told us that they wished they had
evaluated their financial situation earlier and left work sooner.
Some people have been successful in gaining government financial
support, including the National Disability Support Pension and
admission to schemes such as the NDIS. This is certainly not true for
everybody and application to these schemes can be very stressful.
E. Poor sleep
Poor sleep is one of the most common and troublesome issues for
people with a debilitating fatigue condition. They often experience
sleep as unrefreshing; spending a night in bed but wakes up as tired
as before. Other sleep problems are common as well, such as difficulty
getting to sleep, waking in the middle of the night or early in the
morning, and oversleeping.
The treatment of sleep problems usually includes prescription
medications, but lifestyle changes can also be useful. The family can
help by being supportive of adaptations that improve sleep. Good sleep
can be aided by having an environment conducive to sleep and by
having good sleep hygiene.
A comfortable sleep environment includes a good mattress and control
of light, noise and temperature. Some couples solve noise problems
such as snoring by sleeping in separate rooms. This strategy also allows
the unwell person greater control over other elements in the sleep
environment. Having a regular bedtime is also helpful.
Other factors that affect sleep include overactivity, stress and worry. Too
much activity can create a sense of restlessness, sometimes called the
‘tired but wired’ feeling. The antidotes are keeping activity within the
limits imposed by the illness and having a quiet period to wind down
before going to bed, including a period prior to settling of not using
screens including computers and televisions. Stress often leads to
muscle tension, which makes falling asleep more difficult. Worry, too,
can make it harder to fall asleep. Practices that reduce stress and worry
will aid sleep.
F. Cognitive problems
Most people with debilitating fatigue experience cognitive difficulties,
often called ‘brain fog’. These problems include confusion, difficulty
concentrating, fumbling for words and lapses in short-term memory.
There are many strategies they can use to limit cognitive problems. The
discussion here focuses on how family and friends can help.
Most people with a debilitating fatigue condition feel confused by
sensory input coming from several sources at one time. They are likely
to think more clearly if noise and light are at levels they can tolerate,
and if sensory data is limited to one source at a time, ie. Having a
conversation with a person is likely to be more productive if conducted
in a quiet environment, free of distractions like television. Some families
in which the person are bothered by sound use headphones for the
sound portion of television broadcasts. In some cases, the headphones
are worn by them, in other cases, by a family member.
Another solution to sensory overload is to have an orderly physical
environment. Removing clutter is a way to control brain fog by limiting
sensory input. A related strategy for controlling the effects of brain fog
is to live a predictable life using routines. For example, always putting
keys in the same place and having meals at the same time every day.
A final strategy for reducing the effects of brain fog is to be sensitive to
time of day. Most people have better and worse periods during the day.
Probably the most common pattern is a gradual improvement as the
day wears on, with a slowing down in the evening. But for some people
mornings are the best times of day, for others evenings.
The important thing is that each person finds the time that works
for them and their family and friends honour it. The amount of both
physical and mental effort can vary greatly depending on when things
are done. A person may be able to get twice as much done if they
schedule activity for good hours of the day. Similarly, discussions
are likely to be more productive if held during a time when they are
mentally sharpest.
G. Unpredictability
People often have trouble predicting how they will feel from day to day.
This often leads to cancelling or adjusting plans, sometimes at the last
minute. Fluctuations in symptoms can have several causes. One is the
waxing and waning common to many chronic conditions. In addition,
fluctuations may be due to changes in the weather, poor sleep,
overactivity or stress.
Perhaps the most common coping strategy is flexibility. Plans may
have to be changed or cancelled. Family members adjust better if they
recognize that unpredictability is a part of illness and have alternate
activities they can do.
Some families have developed systems for understanding the person’s
ever-changing condition. One system involves having them rate
themselves each day on a ten-point scale. A rating of 1 might be used
for a very good day, with very low symptoms. A rating of 10 would mean
severe symptoms and the need to stay in bed.
Some portion of symptom fluctuations can be brought under control
over time. As mentioned earlier, pacing offers a way to bring greater
stability to life, and therefore fewer surprises. Also, maintaining a
stable environment reduces stress, which is a major trigger of greater
symptoms. So a sensible response to unpredictability is a combination
of flexibility and lifestyle adaptations that promote a consistent activity
level, good sleep and control of stress.
H. Intense emotions
Most people with a debilitating fatigue condition find their emotions are
more intense and harder to control than they were before they became
ill. One student in our program wrote, ‘My emotions are much more
sensitive than ever before. I cry more easily, and I have less emotional
reserve’. Another said, ‘Just recognising that emotions are heightened
as a result of these conditions really helped me. Before learning that, I
was quite puzzled by why I got upset about little things.’
The strength of emotions can create a vicious cycle in which illness
intensifies emotions and then emotions, in turn, intensify symptoms.
For example, people in pain may feel depressed. People who are
depressed have a lower threshold for pain. Similarly, pain can create
frustration, which can lead to muscle tension, which in turn intensifies
pain.
The process by which feelings intensify symptoms occurs even with
positive emotions, as suggested in a comment from another participant
in our program who said, ‘I cried at one of the classes, because I was so
happy to be around people who understood me. Almost immediately, I
had an attack of brain fog’. Whether positive or negative, any experience
that triggers adrenaline, is likely to intensify symptoms.
One example of intense emotions among people with a debilitating
fatigue condition is irritability. People can easily feel frustrated, which
often leads to unfortunate outbursts of anger that may be directed at
those around them.
We suggest that if their illness sometimes affects their moods, they use
a time when they are feeling well to plan things to do to help them feel
better when their mood is low, so they don’t inflict their negative moods
on others. For example, they might plan to respond to feeling irritable
by taking a rest (irritation is frequently triggered by overexertion), taking
a walk or listening to music.
I. Stress
This section focuses on how family and friends can help reduce the
person’s stress.
Stress is a challenge for everyone, but it is especially difficult for
people with long-term illness and those around them. Illness adds
new stressors to those that all families face, and, unlike crises, these
stresses are ongoing.
There is an additional source of stress, one that is inherent in the
person’s illness. Most debilitating fatigue conditions are very stress sensitive illnesses meaning they reset the person’s ‘stress thermostat’,
so that the effects of a given level of stress are greater than they would
be for a healthy person. The combination of additional stressors and
increased vulnerability creates a double challenge for people with
debilitating fatigue conditions. Stress is multiplied while they are made
more vulnerable to the effects of stress.
Being supportive of a person’s efforts to control stress, along with
helping a person to live within the limits imposed by illness, are two of
the most helpful things the family can do to promote their quality of life.
Pacing is one effective way to control stress. Pacing techniques include
keeping activity level within a person’s limits, taking daily rests, using
routine, scheduling activity based on priorities, and timing activity for
the best hours of the day. Other stress reduction approaches include
de-cluttering (for example, reorganizing the kitchen or discarding
unused possessions), limiting exposure to media, limiting contact with some people, avoiding crowds, and making mental adjustments (such
as letting go of outdated expectations).
For many people, work is a major stressor, usually because the
demands of a job are greater than someone’s energy envelope. Some
people have responded by changing their work situation. These
changes have included switching from full-time to part-time work,
moving to a less demanding job, working from home, adopting a
flexible schedule, and leaving the work force, usually through early
retirement.
Light, noise and crowds create stress for many people. Avoiding those
situations or limiting the period of exposure can help them control
symptoms. Many people are selective about their exposure to screens,
avoiding material that is emotionally arousing and shows with rapid
scene changes.
Novelty is another source of stress. It takes more energy to respond to
a new situation than it does to something familiar. One response is to
make life predictable. Some people have done that through routine:
living their lives according to a schedule. They have been able to
reduce the surprises and emotional shocks in their lives, and thereby
reduce their stress.
J. Weather and sensory overload
Two other factors that affect people with a debilitating fatigue condition
is weather and sensory overload.
Changes in the weather or types of weather can affect people’s
symptom levels. Probably the most common reaction for people with
FM is more intense symptoms during times of high humidity. The best
family coping strategy is to accept that the person will suffer more and
do less during these times.
As mentioned earlier, most people are sensitive to noise or light, or to
sensory input coming from more than one source at the same time. The
most helpful response is to tailor sensory input to the person’s limits.
This will often mean limiting sensory information to one type at a time,
for example, talking without any background noise. It may also mean
socializing with only one or a small number of people, rather than in
large groups, and visiting restaurants and other public places in off-peak hours.
K. Additional medical problems
Managing symptoms is complicated by the fact that people with a
debilitating fatigue condition often have one or more additional medical
problems. These include irritable bowel syndrome, food and chemical
allergies, myofascial pain, neurally mediated hypotension, anxiety and
depression, and sleep disorders such as sleep apnoea and restless
legs syndrome.
Many people with a debilitating fatigue condition have food sensitivities
or food allergies. Negative reactions include gastrointestinal symptoms
such as heartburn, gas, nausea, diarrhea, constipation, as well as other
symptoms such as headaches, muscle pain, changes in pulse and
fatigue. Some common sources of food allergy include dairy products,
eggs, soy, wheat, and corn. Often the solution is to eliminate a food or
food group from the diet. Sometimes their diet is restricted to a limited
number of foods.
3. Relationships: Stresses and strategies
Debilitating fatigue conditions create great strains in relationships,
both intensifying existing sources of stress and creating new ones. The
drastic changes brought by illness, together with having less energy,
put family and other relationships under great strain. In this chapter, we
describe relationship problems created by long-term illness and offer
ways to cope with them.
A. Adjusting expectations to a ‘new normal’
People with a debilitating fatigue condition typically function at 50% or
less of their previous level, frequently much less. Trying to do more than
their bodies allow leads to more intense symptoms and sometimes to
even more restrictive limits. To the extent that all those around them
can accept the limits imposed by illness, they can create a plan for
a new type of life. This life requires both practical and psychological
adjustments.
Practical adjustments include redistribution of household tasks, often
increasing the load on the well person Because they have significantly
less energy than before they were ill, people with a debilitating fatigue
condition have less time for relationships than they had when healthy,
creating a loss of companionship. Also, aspects of the illness, such as
the unpredictability of symptoms, energy limits and sensory overload,
suggest the need for adjustments.
Like the person in your life, you have experienced the loss of a dream
and are challenged to adjust to a different type of life than you had
planned. You have lost some part of the companionship you once had
and, instead, may have taken on new responsibilities.
B. Improving communication
Serious illness puts families under great stress. Good communication
can be one of the casualties. You’ll find below some tips on how
to improve communication with the person in your life who has a
debilitating fatigue condition.
22
• Scheduled relationship discussions
A strategy for nurturing relationships and keeping discussion of issues
in a problem-solving context is to set aside time regularly to discuss the
relationship you have with the person in your life who is ill. One couple
in our program calls it their ‘talk night’. They set aside Sunday evenings
as a time to discuss any issue that is on their minds.
• Setting and Approach
For ‘talk night’ type conversations or other important conversations, we
suggest you pick a time when both you will be at your best. Find a time
when you can give good attention and the person who is ill will not be
distracted by pain or brain fog, preferably during their best hours of the
day.
To create an atmosphere of cooperation, consider having each person
acknowledge their part in shared problems and express appreciation
for the other’s efforts. Also, consider having each person ask, ‘What can
I do to make your life easier?’ and each person state, ‘Here are some
things you can do to make my life easier’.
• Seek professional support to assist in communication
The use of counsellors with experience in dealing with people dealing
with chronic conditions can be useful to help you set up positive ways
of dealing with communication and other everyday tasks that become
an issue when someone is chronically ill.
This could be undertaken individually, as a couple or a family unit to
help improve everyone’s understanding of the impact of the illness
C. Intimacy and sex
Because of pain, reduced energy or reduced interest, a couple’s
intimacy is often affected for people with debilitating fatigue conditions
creating another challenge for couples.
Couple’s counselling can be a very positive tool to assist in
communicating each partner’s feelings around changes to intimacy and
sex.
D. Travel
Travel, a source of enjoyment and pleasure for many people, can be
difficult when someone has a debilitating fatigue condition. For most
people with these conditions, however, enjoyable travel is possible if
some adjustments are made.
One foundation for successful travel is realistic expectations. Because
the conditions impose limits and because travel requires more energy
than everyday life, people are able to do less now when traveling than
when they were healthy and less on the road than they can do at home.
Adjustments to illness may include taking extra rest in the days before
a trip starts, taking rests during road trips (for example, a 15-minute
rest every two hours), setting limits on how many hours a day to be
active, taking a full day of rest after a long drive or plane flight, keeping
a flexible schedule to accommodate unforeseen events or higher than
expected symptoms, and alternating an active day with a day of rest.
People with debilitating fatigue conditions have told us that they have
travelled more successfully after they began planning their trips in
great detail. They mentioned using books and the Internet to decide
what they wanted to see, then set their itinerary based on how much
activity they could do. Planning also involved packing ahead of time
and, for some people, planning to use wheelchairs or motorized carts in
airports. One person said that having a detailed itinerary set in advance
helped him resist the temptation to do too much when away from
home.
People also report having more enjoyable trips when they talk to their
travel companions ahead of time about their limits and make a joint
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plan. The person with a debilitating fatigue condition may need extra
rest, so there may be some activities they won’t be able to do. They
may join in some activities but forego others. Taking extra rest before,
during and after a trip is a common travel strategy. Store up energy by
taking extra rest before a trip, limit symptoms during a trip by taking
extra rest while away and take whatever extra rest is needed after to
get back to normal.
E. Taking care of yourself
Living with someone with a debilitating fatigue condition is a stressful
experience. Here are eight strategies you can use to take care of
yourself, responses to the pressures created by the presence of serious
illness in your family.
• Maintain your health
Take time to get adequate rest, to eat well and to exercise.
• Accept help
When people offer to help, accept the offer and suggest specific things
that they can do. If your finances allow, consider paying for help in such
areas as meals, house cleaning and transportation.
• Take time for yourself
Get respite from caregiving by spending time away from the person
who is ill, for example by pursuing a hobby. The point is to give yourself
an opportunity for leisure and enjoyment.
C. Intimacy and sex
Because of pain, reduced energy or reduced interest, a couple’s
intimacy is often affected for people with debilitating fatigue conditions
creating another challenge for couples.
Couple’s counselling can be a very positive tool to assist in
communicating each partner’s feelings around changes to intimacy and
sex.
D. Travel
Travel, a source of enjoyment and pleasure for many people, can be
difficult when someone has a debilitating fatigue condition. For most
people with these conditions, however, enjoyable travel is possible if
some adjustments are made.
One foundation for successful travel is realistic expectations. Because
the conditions impose limits and because travel requires more energy
than everyday life, people are able to do less now when traveling than
when they were healthy and less on the road than they can do at home.
Adjustments to illness may include taking extra rest in the days before
a trip starts, taking rests during road trips (for example, a 15-minute
rest every two hours), setting limits on how many hours a day to be
active, taking a full day of rest after a long drive or plane flight, keeping
a flexible schedule to accommodate unforeseen events or higher than
expected symptoms, and alternating an active day with a day of rest.
People with debilitating fatigue conditions have told us that they have
travelled more successfully after they began planning their trips in
great detail. They mentioned using books and the Internet to decide
what they wanted to see, then set their itinerary based on how much
activity they could do. Planning also involved packing ahead of time
and, for some people, planning to use wheelchairs or motorized carts in
airports. One person said that having a detailed itinerary set in advance
helped him resist the temptation to do too much when away from
home.
People also report having more enjoyable trips when they talk to their
travel companions ahead of time about their limits and make a joint
plan. The person with a debilitating fatigue condition may need extra
rest, so there may be some activities they won’t be able to do. They
may join in some activities but forego others. Taking extra rest before,
during and after a trip is a common travel strategy. Store up energy by
taking extra rest before a trip, limit symptoms during a trip by taking
extra rest while away and take whatever extra rest is needed after to
get back to normal.
E. Taking care of yourself
Living with someone with a debilitating fatigue condition is a stressful
experience. Here are eight strategies you can use to take care of
yourself, responses to the pressures created by the presence of serious
illness in your family.
• Maintain your health
Take time to get adequate rest, to eat well and to exercise.
• Accept help
When people offer to help, accept the offer and suggest specific things
that they can do. If your finances allow, consider paying for help in such
areas as meals, house cleaning and transportation.
• Take time for yourself
Get respite from caregiving by spending time away from the person
who is ill, for example by pursuing a hobby. The point is to give yourself
an opportunity for leisure and enjoyment.
• Seek support from other caregivers
Fellow caregivers and care organisations can offer strength, support,
inspiration, and models of successful adaptation.
• Stay connected
Avoid isolation by maintaining relationships with extended family and
friends.
• Consider counselling
Be sensitive to signs of stress in yourself and consider seeing a
counsellor if you detect them. Signs that counselling might be
appropriate include feeling exhausted, depressed or burned out, or
overreacting, such as by angry outbursts. Counselling can be helpful
for gaining perspective on your situation or to explore communication
problems. You might get help in individual sessions or in joint sessions
with the family member who is ill.
4. In Conclusion
Building a new life includes creating new activities to do with your
family member who is ill. The new activities replace ones lost because
of illness and counteract the temptation to dwell on illness and loss.
One couple in which the wife is housebound have taken on the study
of music together. Because illness can be all consuming, it may
take some deliberate efforts to break through. The point is to create
occasions for shared pleasure, so that both ill and healthy members of
the family don’t come to see their relationships as just about illness and
deprivation.
A member of one of our person groups described the combination of
shock and adjustment in an essay she titled ‘Welcome to Holland.’ She
wrote that having CFS was like planning a trip to Italy and, when the
plane landed, being told ‘Welcome to Holland’.
‘Holland!?’ you say. ‘What do you mean Holland? I signed up for Italy! I’m
supposed to be in Italy’. But there’s been a change in the flight plan. You have
landed in Holland. And there you must stay. The important thing is that it’s
just a different place. You must buy new guidebooks. You must learn a whole
new language. And you will meet a whole new group of people you would
not otherwise have met. It’s slower paced than Italy, less flashy than Italy. But
after you’ve been there a while, you look around, and you begin to notice that
Holland has windmills, Holland has tulips, Holland even has Rembrandts.
So, welcome to Holland.
Along with the person in your life, you have landed in an unexpected
destination. You have experienced the loss of a dream and are
challenged to adjust to a different type of life than you had planned.
You have probably lost some companionship and, instead, may have
taken on new responsibilities. But, like the person in our class, you have
a choice to dwell on what you have lost or to seek out new possibilities.
Chronic illness has profound effects, changing every part of life: how
much a person can do, people’s moods, their relationships, their
finances, their hopes, and dreams. Even though you may not have the
ability to change the fact that someone in your life has a debilitating
fatigue condition there are many things you can do to improve their quality of life.