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EspañolFatigue
Everyday tasks take more energy
Some ordinary tasks can take much more energy when a person lives with pain, severe fatigue or several combined symptoms.
Understanding to support better
When a loved one lives with EDS, gastroparesis or the consequences of these conditions, it is not always easy to understand what is happening or to know how to help.
Being close to someone doesn’t mean you have to understand everything
A chronic illness changes a large part of daily life, even when it does not show.
The loved one may then face symptoms that are hard to understand, medical appointments, treatments or periods when the person’s abilities change a lot.
You don’t need to know every medical detail to be supportive. Listening, believing what is said and asking how to help can already make a big difference.
One day can be very different from the next
With chronic illnesses, abilities can vary. A person can manage something one day and not be able to do it the next, without this meaning they are exaggerating or not making an effort.
Pain
Pain is not always visible
A person can talk normally, smile or take part in an activity while feeling severe pain.
Variability
Limits can change
What is possible one day is not always possible every day, or for as long.
When the body needs more adjustments
Ehlers-Danlos syndrome covers several different situations. Depending on the person and the type of EDS, it affects the joints, tissues, pain, fatigue or other parts of the body.
So the need for help is not the same for everyone.
A person may need help with some tasks while wishing to keep as much independence as possible for others.
Understanding EDSWhen eating and drinking become difficult
Gastroparesis can cause nausea, vomiting, feeling full quickly, fullness after meals, pain or bloating.
Eating can then become a source of anxiety and real fatigue.
A person who eats little or differently is not lacking willpower. Dietary adjustments can be a response to genuinely limited tolerance.
Understanding gastroparesisA few ways to be there
There is no single right way to support someone who is ill. The most useful thing is often to start from their real needs rather than assuming what they want.
Listen
Let the person talk about what they are going through without immediately looking for a solution or an explanation.
Ask
“What do you need today?” can be more helpful than deciding for them.
Adapting daily life
Household chores, getting around or going out can sometimes be adjusted according to how the day is going.
Going with them to appointments
If the person wishes, being there can help remember information, ask questions or simply offer support.
Respecting eating difficulties
Avoid guilt-inducing remarks about quantities, meals or weight. Food tolerance can be genuinely limited.
Respecting their pace
Leaving room to cancel, rest or change plans takes away a lot of pressure.
Some phrases can hurt
Fatigue, worry or helplessness can lead you to look for a quick solution. Yet some remarks can unintentionally minimise what the person is going through.
What to avoid
“But you look fine.”
Outward appearance cannot measure the intensity of symptoms or fatigue.
What to avoid
“You just need to try harder.”
The limitations caused by a chronic illness are not necessarily due to a lack of willpower.
Better to say
“What could help you today?”
An open question lets the person express their own needs.
Some periods simply need more support
Worsening symptoms, a new treatment, a hospital stay or a period of severe fatigue can temporarily change the person’s needs.
At such times, ordinary tasks can become much harder and the person may have less energy to explain what they need.
Offering practical help (preparing a suitable meal, doing some shopping, going with them to an appointment or simply being available) can be more helpful than a long list of advice.
Looking after yourself too
Supporting someone who is ill can be exhausting. You may feel worry, fatigue, frustration, guilt or sometimes helplessness.
A loved one is not meant to become a doctor, nurse or therapist. You can support them without carrying the whole situation alone.
Keeping time for yourself, asking for help and setting limits helps you keep going over time.
If the situation becomes too heavy, talking to a professional or seeking outside support can also be a way of taking care of yourself.
Emergency in France: call 15 or 112. If your loved one or you are feeling very low: 3114 (suicide prevention, France), free, 24 hours a day, 7 days a week.
All the numbers
Where to find support? (in France)
- Avec nos proches: a national helpline for carers, on 01 84 72 94 72, 7 days a week from 8 am to 10 pm. Website ↗
- Mon Parcours Handicap: the official website on carers’ rights and respite solutions. Carers’ page ↗
- Ma Boussole Aidants: a directory of support and services near you. Website ↗
- At work: depending on your situation, carer’s leave can allow you to suspend or reduce your work. Your employer or the websites above can advise you.
Going with them to a medical appointment
If the person wants company, a loved one can help note down important information, remind them of a question or simply be there.
However, the appointment remains the person’s own: their consent, choices and voice must stay at the centre.
Preparing an appointmentYou don’t need to be perfect to be a support
A sheet to help organise day-to-day support, together.
Loved ones are also welcome at our meetings, as a member’s companion.