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5 Biggest Fears Rare Disease Patients Have And My Super Easy Solutions!

Updated: Oct 18, 2022

Cambridge English dictionary defines fear as an unpleasant emotion or thought that you have when you are frightened or worried by something dangerous, painful, or bad that is happening or might happen.

Fear is an inevitable emotion in our lives.



Let me quickly ask you a question.

How many times did fear stop you from doing what you always wanted to do?

Get brutally honest with yourself.


We are only human! Quite often, we do not have control over our fears.

However, the good news is that fears can be managed!


It’s not pathological when a 1-year-old child fears separation from a parent.

It’s not pathological when a child learning to ride a bicycle fears a fall.


However, when you certainly fear living with a rare disease,

It’s a problem that needs to be addressed.


When fear takes over your ability to lead a peaceful life,

It becomes a problem that needs to be treated.


When fear disturbs your daily routine,

It becomes a matter of concern that needs to be talked about.

In this blog post, we will cover

  1. What is fear?

  2. Difference between fear and anxiety?

  3. 5 most common fears that rare disease patients have

  4. The best ways to overcome them?

  5. Conclusion

By the way, here is some cool stuff for you!




Getting back to the place where I began.


Fear and anxiety are two very different emotions.

To put it simply, fear is a response to a known danger.

Anxiety is an emotional response to often a vague or unknown stimulus.

However, they are often used together.

Let's talk about 6 types of fears that rare patients have.


1) Lack of emotional support.


This is a famous line that almost every rare patient would say.

"We don't fit in".

Rare patients lack enough mental and social support. Forget about society and the world, they are often shunned by their very close friends. To make things worse, they are not welcomed by some families too!


Ever since the rare disease diagnosis strikes them, rare patients feel left out.

It's not their mistake to be blamed.


The need is real!

Why do they fear?


•The root cause lies within the mindset of society and our present-day world. The world is often judgemental with the pressure of fitting in. Rare patients struggle with it. At times, they are often stressed too!


•Rare disease patients aren't welcomed by society to their set level of expectations. Rare patients are unable to attend family gatherings and public functions. this is simply because of their illness. They fear that their friends or family would understand them.


•At times, even the caregivers are drained mentally. There's often a gross lack of support at home.


•Unemployment adds to the pressure too!


How can we deal with this?

  • Get active on social media.

  • You clearly don't have to be perfect to start!

  • Get super creative. You can start blogging, podcasting, content writing, or any online venture.

  • The sky's the limit for those blessed with a skill.

  • You need to join multiple support groups that work for and support rare patients.

  • (Pro tip: I'm the Indian ambassador for Rare Disease Warriors. Feel free to join this group)

  • Remember, the world has everything to offer to those who are willing to see!

Support is there. Go and find it!



The Internet is a crystal clear solution.

Sit in the comfort of your home and connect with people across the world.

There is no barrier. Trust me with this.

Check out these links for more support.




2) The problem with finances.


The annual cost of rare diseases in the U.S. was nearly $1 trillion in 2019. This is according to a study released by the Every Life Foundation for Rare Diseases.

No, do not roll your eyes now. The numbers are real.

The treatment for rare diseases is exorbitant, however, there is always hope!


How can we deal with this?

  • The world has so much to offer only if you are willing to take it.

  • Start an online business, and learn to work from the comfort of your home. This is better late than never.

  • Start an online fundraiser.

My recommendations are Ketto, Milaap, and GoFundMe.



3) Fear of death.


In the end, one can give only one look upwards, give one breath outwards.

At that moment, a man probably surveys his whole life.

For the first time — and the last time.

FRANZ KAFKA


This article tells us that even caregivers live with the fear of mortality!

You will not be surprised by this.


11 percent of respondents of a survey conducted in the US, stated they were very afraid of death.

The unchanging reality is that we are all going to die someday!


Nothing and nobody ever stay permanent.

Life itself is transitory!


How can we deal with this?

  • Accept that we are all going to die. As bitter as the truth is, death is inevitable.

  • Seek professional help if you are constantly worried or feeling anxious.

  • Remember, having a rare disease or being sure to die someday should not stop you from living your life today!

  • All that matters is being in the present.

  • Read books like the Power Of Now by Eckhart Tolle.

  • Practice mindfulness, it definitely gives you a boost to living life to the fullest.

  • Watch similar videos on the internet. Connect with like-minded people across the globe. You will eventually be amazed at how they live their life to the fullest!

  • You will be happy too. Happiness is your priority. Your life is your responsibility!

  • Start living today, before death knocks at your door. Make a list of all that you want to do.

  • Focus on that one step at a time.

  • You will surely heal, trust me!



4) Fear of looks.


This article says rare diseases affect the physical appearance of an individual.

That in turn results in lowering the self-esteem of the patient.


More often than not, rare disease patients fear not looking good enough. They spend hours together standing in front of the mirror judging themselves.


It can be due to a physical deformity that happened because of a rare disease. Even temporary weight gain due to the intake of steroids. The pressure to look beautiful is real.


When the world has to teach so much about inclusion and accept diversity with open arms. We are still falling behind and failing miserably.


It is now that we need to understand that looks are just a small fraction of what defines an individual. We can always love people the way they are!


How can we deal with it?

  • Looks are just a small fraction. Work on something that nobody can steal from you. Work on your confidence and personality.

  • Increase your self-esteem. Make a list of everything that you are good at.

  • Now take one skill from your list and start practicing it every day.

  • Practice gratitude. I would also recommend keeping a gratitude journal.

  • Count the blessings in your life.

  • My dear warrior, take pride in who you are. Just look at the road that you travel by. I am filled with pride. Aren’t you?

  • Let me also tell you another fact. Not everyone in this world, no not even your close friends are truly concerned about how you look.

  • Take that off your mind. Now, this is all in your head!


5) Fear of not finding a cure to the illness.


This is where The Rare World Official has got your back!


Some organizations are working for the welfare of rare disease patients.

If it’s possible for you, take part in the field trials.


Get active on social media. Find help from like-minded patients.

Believe me when I say this. At times, patient forums have answers to your questions.


With everything said and done, I still agree with you. There are not enough doctors who can treat rare diseases. It is mainly because of a lack of awareness.

The information that we need is scarce, but the doctors are trying.

This is the only formula that works today when looking for rare disease treatments.

You reach out to the doctors, you reach out to other patients.

They will reach out to you!


Have hope.

Great things take time!


Conclusion

With everything that is said, there is still hope.

Fear can be overcome by identifying it and by making it familiar.

The more you run away from fear, fear chases you.

So, what can you do instead is simply face your fear.


Face your fear and trust me, life smiles at you!

Like and share this blog post if you really liked it.

That shows that you care for rare too.


Do check out my other blogs at https://www.therareworldofficial.com/blog

Please share!


1 Comment


Srikanth N
Srikanth N
Oct 07, 2022

Very beautiful Blog☺️

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