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Rare Disease Day: Isolation and psychological impact, let's talk about it!

Published 28 Feb 2021 • By Clémence Arnaud

To mark Rare Disease Day on 28 February, we wanted to focus on the psychological consequences rare diseases can cause in the lives of patients. 

How to overcome isolation when living with a rare disease? How to live well with a rare disease? What are some ways to reduce the psychological impact of rare diseases on an individual?

Find out in our article below!

Rare Disease Day: Isolation and psychological impact, let's talk about it!

Rare diseases: diverse and complex pathologies

For a condition to be classified as a rare disease, it must affect less than one person in 2,000. These diseases will affect the patient's life in a brutal or progressive way on a physical, intellectual, functional or sensory level. The small number of patients and the heterogeneity of symptoms make care and therapeutic advancements even more difficult. 

The problem of these conditions can go as far as the patient wanting to hide the disease from his or her family, friends or professional circle. It is estimated that a little more 30% of rare disease patients or parents of affected children have felt the need to hide the condition from their family and friends.

Psychological impact 

The French Rare Disease Observatory (L'observatoire des maladies rare) is a study that makes it possible to understand the impact of rare disease on patients' lives. In terms of the psychological burden of rare disease, they have observed the following trends:

  • More than 1/3 of patients are offered psychological counselling
  • Young patients (from 2 to 17 years old) are offered psychological care more often than adult patients

These psychological impact can manifest itself in different ways: depression, violent outbursts or behavioural problems.

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Source: Observatoire des maladies rares (2015)

According to a study by the European Rare Barometer, 37% of respondents say that they are often (19%) or very often (18%) unhappy or even depressed, compared to 11% in the general population. Lack of understanding of their pathology, lack of support, stress related to the delay in diagnosis and the emotional weight of the pathology are some of the factors leading to psychological problems. Changes in the body caused by the condition also play a role in patients' mental health.

A Carenity member in the UK wrote: "I am angry and frustrated, I can't do what I used to do and I sometimes feel weak. I just want to be myself again".

Isolation

Rare diseases are often not well known among the general population and lead to real problems in patients' everyday lives. Patients can feel especially isolated. 

Out of 438 respondents in the Rare Disease Observatory study, 48% said they felt a strong feeling of isolation

Family and emotional isolation

This feeling of isolation can be caused by family tensions: 72% of the 334 people questioned by the French Observatory for the Sick said they felt some tension in their relationship, strong enough tension in some cases to lead to divorce or separation.

Professional isolation

The professional world is a complicated one for patients suffering from rare chronic illnesses. Indeed, the impact of these conditions on working hours can be significant and can be a barrier to employment.

According to the European Rare Barometer study, 21% of the 1095 respondents had 90 days or more of absence from work due to their medical appointments. This corresponds to a trimester of work absenteeism. Many people are therefore faced with the choice of working part-time: the proportion of people with rare chronic illnesses working part-time is higher than in the general population.

 For young patients, this can lead to early drop-out from school or lower professional ambitions.

 "I had to leave my full-time job to take a part-time job from home", said a member of Carenity US.

Social isolation

Leisure time and recreations are also problematic for rare disease patients. Indeed, both patients and carers often need to reorganise their time to adapt to the needs caused by the disease. In a 2018 European study, 42% of people surveyed devoted more than 2 hours a day to care related to their chronic rare illness.

Ways to improve quality of life

Many organisations exist to reduce isolation, such as patient associations (rare disease alliances, etc.), sports clubs adapted according to the pathology, etc. Social networks or patient forums also enable discussion about illness. 

Improving care pathways and access to health information for patients is also important to reduce the mental burden that the disease can have. Rare à l’écoute ("Rare Listening"), for example, is a French podcast dedicated to rare diseases, providing reliable and understandable information for all.


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avatar Clémence Arnaud

Author: Clémence Arnaud, Digital Marketing Assistant

Clémence Arnaud is currently an intern in the digital marketing team. Her role is to lead and moderate the community so that users have the best possible experience on the platform. She is also be responsible for... >> Learn more

2 comments


Tigger.co.uk
on 28/02/2021

I used to love my life once now cant eat the foods I used to enjoy because if I do I know I can become very ill or even die ,I cant go dancing anymore because if I do I will probably end up being breathless, I cant enjoy a drink anymore because I take to much medication, I cant enjoy making love anymore because i dong feel like a woman anymore ,i cant cook ,shower ,or even get dressed on my own because if i cook i can drop things or get burnt ,if i dont get help showering, I can go dizzy if I dry my self I cant bend ,as I'm in to much pain or have panic attacks  ,I love going out but I cant go on my own because I'm so scared of getting hurt because of all the trauma I have had in my life ,its hard for me now if it wasnt for my trev I dont think I would want to be here life scares me now more than ever with this covid ,I'm missing my family but scared to go out incase I get this covid because I know if I caught this I wouldn't be able to get through it even now I have had my first jab I'm still worried about catching it when I get my second jab I shall still wear my mask as there are so many people that are not having it my life feels as though there isng nothing anymore to look forward to I hate feeling like this Tigger


DMH8472
on 28/02/2021

I have a rare disease and have had it since 2012. Mine is called CIDP and attacked my central nervous centre. Because it took 13 weeks to diagnose it dod a lot of damage leaving me very disabled. Thanks to a marvelous Professor and a rehabilitation centre they got me walking but will never be able to walk far about 10 metres, and then my legs fail me.

Yes, my life changed drastically but I have always been a positive person and so I adapted my life to accept what I can no longer do. My immune system is controlled by medication and it is now in remission. For the last 3 years, I am now battling Parkinson's disease so although very common on top of the CIDP has curtailed my life even more but I refuse to give in to it and am doing as much as I can. I refuse to get depressed because if I went down that road I might as well give up and I won't.

I very rarely comment on here because so many people are saying they are depressed and I have to say they make themselves worse. I wish that they weren't and have to say it's hard work to stay positive. 

I have had to shield for the last year because of Covid and it can become lonely especially as my Husband died a year ago and we had been married for well over 50 years. I have had my first inoculation of the AZ vaccine and will get the second one in 10 weeks' time and then hope to be able to get out. I have an adapted car and have a medical each year to make sure I am ok to continue driving. So hope that life will rever to how it was before this awful covid hit us all

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