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Rare Diseases And Chronic Illness Patients: 5 Points To Check Before You Love


“Are you looking for love, when you are already in love?”

Now that is a big red flag.


Love for rare diseases and chronic illness patients isn’t easy.

That being said, love isn’t the same for everyone.


We all must have at least one person on our minds. They found love quite early in their life. We consider them lucky for having found the “happily ever after”.


However, some people are in their 40’s and 50’s still trying to find love.

I am trying to say there is no right or wrong formula in love.


It depends on the expectations that are set by the people.

The range of expectations varies greatly for rare diseases and chronic illness patients.


Surprisingly, the number of suicides due to relationship problems has increased with time.

There was a survey conducted in South Korea in 2021. It covered men and women who were divorced, separated, or widowed.


The results showed that around 49% of men and 30% of women had a mental health problem at one point in their life. Men reported higher rates than women across all relationship status categories.


By saying all of these, what I am trying to say is this.



You may choose to keep your emotions in place. Still, at least a portion of your mental health is somewhere taken over by love and relationships.


Love can be challenging at times for rare diseases and chronic illness patients. There will definitely be an increased responsibility that comes with it.

But the good news is that there is always hope.


In this blog post, we will cover

  1. 5 extra responsibilities that come along with rare love.

  2. How can that be handled in a better way?

  3. What to do if things aren’t working out?

  4. 6 benefits of seeking professional help.

  5. Conclusion.


Relax! Finding love in a rare disease or chronic illness patient isn’t impossible.

There is always light at the end of the tunnel.


Here is an inspiring true story of the same.


In my opinion, there are 5 big responsibilities in rare love.

One must undeniably agree with these.

Let’s have a look at those.




1) Seeing the brighter side in you.

This is the simplest task.


There is a red flag here because it can affect the patient’s mental health extensively when done wrongly.

I mean to say, it can cause irreparable damage.


Watch out for these 3 signs.

  • Does your partner always encourage you to do better, despite your illness?

  • Does your partner accept you for who you are?

I mean to say, your partner should never put pressure on you to look a certain way.

  • Does your partner accept your family history wholeheartedly? (they shouldn’t hold you accountable if you have a genetic disease. Being born a certain way isn’t your fault)

If you answered a YES for all of these questions. Congratulations! You have found the ‘one’.

If not, it’s time for you to work on your relationship.



2) Sharing the responsibilities that come along.

Needless to say, love is mostly about sharing responsibilities.

It can be all rosy and colorful in the initial days of your relationship.


But believe me when I say this, fights start here!

The real deal-breaker lies in these 2 questions.

  • Is your partner making up for your illness?

By this, I mean to ask this. Is he/she able to make it up where you are unable to perform to the best of your abilities?

  • Consider your illness is making you bound to your wheelchair. Is your partner getting the grocery, doing the cooking, and washing the dishes?

If not, are they making other arrangements for it?

That is a real deal.


If you have answered “YES”, then nothing like it.

I’m so happy for you.



3) Having a mind of their own.

Now, this is a point that I need to mention.

I am compelled to write this point.

By mentioning this, I’m asking you if your partner has an independent mindset.

This is a checklist for you.

  • Will your partner really bother about what society thinks?

  • Will your partner take a stand for you, even if their family is talking sick about your illness?

  • Will your partner find a strong ground to stand upon and not blindly go by what people expect of you?

  • Will your partner accept negative criticisms and not get carried away by them?

  • Will your partner’s opinion of you stay the same? I mean, this is regardless of what people think of you.

This checklist is going to help your mental health tremendously. There is nothing more beautiful than staying with a person who sees your worth. This is despite what people have to say about you!


4) Taking care of the finances.

The treatment for rare diseases and chronic illnesses is exorbitant. That needs no special mention.

The game-changer part lies here. You need to make sure that these are checked. Checked way before you say YES to someone.

Lack of finances to afford palliative care can be frustrating.

It can make your partner feel ignored and neglected too.

The best way to avoid this is to prevent that in the first place.

Here is a checklist for you.

  • Does your partner have a thorough understanding of the costs of your illness?

  • Are they fully aware of the health insurance coverage you have?

  • Does your partner know about your bank accounts and details?

  • Is your partner aware of the savings that you have too!

With everything that is said so far,

It would be nicer (though optional)

  • If you, as a rare disease patient or a chronic illness warrior have a stable remote/work-from-home job too.

Trust me, the limit is what we set for ourselves.

  • If your partner or you have multiple sources of income.

Make sure you check this before it’s too late.


5) Talks about children.

This is the last point that I am mentioning here. Although children can be a lot of fun, taking care of a child is tiring.

There is no second-guessing this.

Now, this can be an extremely sensitive issue to talk about.

So, make sure that your partner and you are the only decision-makers in this.

  • Your partner and you have consulted the doctor. This is to understand if your illness runs in families.

  • On knowing that, you both have mutually agreed to have children or not.

(If you have decided to have a child, welcome the little one into the family)

  • The parenting roles are clearly understood. There is always mutual respect between you both.


Relationships aren’t easy. But, with the right person, they are not impossible either.

Love with rare diseases and chronic illness patients comes with certain sacrifices.

The number one sacrifice that you must be willing to make is Time.

It is always nicer to find a partner who is willing to give you more time than usual. That can help you both understand each other better.


If you have tried everything. If you have failed in your efforts.

Or even if you are even a little uncomfortable with how things in your relationship are going. Consider speaking to a mental health professional.

Here are my 6 benefits from therapy to you.



  • Therapy does to you, what you couldn’t do to yourself. It is therapeutic. It is healing. It gives you a sense of belonging.


  • It makes you feel heard. It is rightly said, not all problems need solutions. Sometimes, the only therapy we need is to find someone who would listen to us.


  • It makes you understand your partner’s point of view too. There is no better blessing than being able to understand each other. There is no better gift than being understood too.


  • Therapy can help you be more empathetic and kind. You will learn to appreciate the world better by being able to see through a different lens.


  • You would be more grateful for all that you have. Gratitude is something that decides your altitude.


  • Lastly, therapy can help you manage your emotions better. Name any emotion, be it anger, frustration, anxiety, fear, or whatever the emotion is. You will learn to manage your thoughts and work out your thought process.

Forget about understanding the world, the real battle is in understanding yourself.

What’s a bigger gift that you can give to yourself than this?

To love is a choice, but to be loved is a blessing.

Our thoughts and our life overall are defined by the people who we surround ourselves with. Let that happen the right way!

Conclusion

One must be careful when choosing a partner for rare diseases and chronic illnesses. With small steps taken in the right direction, reaching the shore is never impossible.


Deep inside, we all crave to be loved and appreciated.

Relationships can be challenging at times. But, that is when mental health therapy comes into the picture.

For those who are willing to put in the effort,

For those who are willing to learn from each other and grow,

For those who are willing to be good communicators,


Love is definitely the best place to be in!

Be in love, and fall in rare love today.



If you liked this blog post, please check out my other blog posts.


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1 commentaire


Srikanth N
Srikanth N
18 oct. 2022

😍

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