36% of rare disease patients and 19% of caregivers have suicidal thoughts.
This is the result of a survey that was conducted in May 2022.
It was about mental health care for rare disease patients in the United Kingdom.
Living with a rare disease affects the patient's mental health. The majority of respondents in the survey (> 90%) have felt worried/anxious; stressed; and /or low/depressed.
The greatest challenge they faced was the limited knowledge of the condition. It was amongst the healthcare professionals (88%).
The second challenge was not being believed or taken seriously by healthcare professionals.
More than 50% of respondents said so. That they had never been asked about mental health by their healthcare professionals.
These results compelled me to write this article.
It is about the importance of mental health in rare disease management.
In this blog post, we will cover
1) What is a rare disease?
2) Who is a mental health professional?
3) How are they related? Do we really need a mental health therapist in managing rare diseases?
4) What is the current mental health scenario in India and in the world?
5) What is the impact if we include mental health therapists in managing rare diseases?
6) Conclusion
WHO defines a rare disease as often debilitating lifelong disease or a disorder. There is a prevalence of 1 or less, per 1000 population. There is however no universally accepted definition of a rare disease.
It is estimated that globally around 6000 to 8000 rare diseases exist.
We have between 72 to 96 million people affected by rare diseases in our country, India.
Source: Latest National Rare Disease Policy, India.
Click here to know about the latest rare disease policy.
A mental health professional is a health care practitioner who offers services.
These are for improving an individual's mental health or treating mental disorders.
How are rare diseases and mental health related?
There is a strong correlation between rare diseases and mental health professionals.
Mental health professionals should be included in managing rare diseases.
The most common mental health problems faced by rare disease patients include anxiety, depression, stress, and panic attacks.
Rare disease patients often complain about the lack of peace in their life. They are constantly worried about the future.
They struggle to fit in. There is a social stigma that we generally have towards psychological illness.
This makes it even more difficult for the rare to feel at home.
From body shaming for weight gain to being blamed for not being the best at the workplace. Chronic illness has gradually taken mental health away.
There was another study conducted by the United States.
On average, rare disease patients experienced greater anxiety than 75% of Americans.
They also had greater depression than 70% of Americans,
People having rare diseases are sometimes not welcomed with respect by society.
Two-thirds of people with rare disorders feel they do not get enough support from the healthcare system. People with rare disorders want to meet others with their condition (Huyard, 2009). But, most have never done so.
The major loophole lies in the fact that rare disease patients aren’t even considered by society. They aren’t even given a chance to perform to the best of their abilities.
Forget about workplace discrimination. Even in schools, children living with rare diseases aren’t treated on par.
Most schools assume that children with rare diseases do not perform well.
They need that extra care and attention. Agreed!
But what’s the absolute need to judge someone’s abilities based on a unique rare disease?
80+% of rare diseases affect children.
What can be the psychological impact that the disease could leave on children?
It is sad that this isn’t emphasized much!
There is discrimination shown towards special children at schools. This severely damages the child’s self-esteem and confidence. Children only learn to trust themselves.
The damage psychologically is done at such a tender age. No wonder, this trauma lives for a really long time. At times, it may be difficult to treat this too!
Rare disease patients today are made to live their life on someone else’s benchmarks.
Why is there so much pressure from society to look a certain way? Rare disease patients often feel judged by society. They are constantly living in denial. In denial of their own thoughts and belief system,
In short, rare disease patients are living stressful life.
Wait! Hold on! Don’t get me started on the ‘worry’ factor.
On average, rare disease patients wait for nine years to receive a correct diagnosis.
What could have been their mental health status during the waiting period?
This has left me with lots of questions!
Now, tell me.
Do we really need a therapist? Should a mental health therapist be included in the team of treating doctors?
Don’t you think mental health therapy should be made mandatory for rare disease patients?
In my opinion, it is certainly YES!
It should be made mandatory for people with rare diseases.
What is the current scenario in India and in the world?
Don’t be shocked when I say that every seventh person in India, suffers from some form of mental disorder.
As of a 2015 study, over 322.48 million people worldwide suffer from some form of depressive disorder. As of 2017, more than 14 percent of the total population in India suffers from variations of mental disorders.
When it comes to the efficient team of mental health professionals,
Europe has the highest number of mental health workers at 45 per 100,000 population,
The global average of mental health workers is 13 per 100,000 population.
There is a global need for mental health professionals to be given opportunities. So that, they can be considered as a part of the rare disease management team.
What impact can mental health professionals make in the rare disease community?
With everything said so far, it can indeed be argued. Mental health professionals can bring about a change in the rare disease community.
They can help us live better and laugh better.
Mental health professionals can help us in managing the difficult emotions that patients face. They can help patients cope with anxiety and depression.
Grief is another major emotion that rare disease patients face.
In my words,
Never ever underestimate the power of grief.
With grief, comes the power of letting go.
Letting go of thoughts or diseases which aren’t in our control.
Mental health therapists can teach us the art of acceptance. Self-love is the hardest battle to be fought as a rare disease patient.
They can help sow the seed of self-love.
Mental health professionals are non-judgmental and empathetic.
Even if the therapy session lasts only for an hour or two, it can make rare disease patients feel at home.
Caregivers who are under massive hidden stress and trauma can be taken care of too. It is traumatic beyond words to see a close one, a parent, or a child suffer. It is unfortunate that they don’t get enough attention in society.
With great therapy or at least with a pair of listening ears, I am sure that the caregivers can only care more.
Mental health therapists can teach the non-rare disease community, to let live. To keep their wild stares away. I agree the world is not all bad and unfair. Still, the mindset of the non-rare disease community should change drastically. That is the need of the hour.
They need to practice inclusion and give fair if not equal chances to the rare disease community.
Conclusion:
The world is evolving at a faster rate than what you and I can think of.
Sometimes, miracles do not happen, they are created!
It’s not wrong to give the rare a chance.
It’s not wrong to ask for help.
It’s not wrong to speak for the rare.
Take that leap of faith today!
Be that voice today!
Know about the 10 best job options for rare disease patients here.
If you want to know why I started blogging, check out this blog post.
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Love,
Dr. Shyamala Peesapati.
Founder - The Rare World Official.
Rare disease advocacy groups that raise awareness:
Global Genes – https://www.globalgenes.org/
Eurordis – https://www.eurordis.org/
NORD – https://rarediseases.org/
Rare Youth Revolution – https://www.rareyouthrevolution.com/