Why Patience Is So Important When You Have FA

Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening.

The fact you have to depend on someone else to live your life definitely causes tension and can be debilitating in itself. You never feel refreshed after a decent night’s sleep, which affects the amount of effort you can give during the day.

Simply put: FA is one of the most frustrating elements of life and it only gets harder as it progresses. It’s annoying and every little thing takes a lot of time and effort.

One of the best methods to deal with FA is to have patience. Patience isn’t something taught and learned in a single day and you can’t just snap your fingers to develop it. As a patient with any type of illness, patience includes the element of forgiveness. When you make a plate of food in the kitchen and end up dropping the entire thing in transit to the table or when your knees give out suddenly and cause you to fall in the middle of the grocery store, it seems like being able to move past the incident is almost impossible. That’s when having patience becomes a necessity.

MORE: Common communication issues when you have FA

Sometimes patients don’t realize how much harder they have to try — for everything. Often, comparisons to the average person lead to feelings of disappointment, which can be incredibly disheartening.

You have to understand the magnitude of what you’re facing. You have a progressive illness which affects your entire body. No matter the stage of progression, you can only do what you can.

There are many physical restrictions for FA patients, which is why it’s so important to be patient with the process.

It’s definitely easier said than done, like most lessons in life. Try to make it a habit of thinking, “OK, this is completely out of my control and I tried my best.” Patience and self-forgiveness are lessons learned over time. As long as you can make small mental changes and remain open to figuring out that process, it will eventually become second nature to you. Remember: you’re not the average person and you deserve the ability to mess up and move on.

MORE: How to handle feeling like a burden when you live with FA

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

2 comments

  1. Jamie says:

    I’m sorry but my patience has about run out with these pharmaceutical companies!
    There are no good excuse you can give, that we have not progressed beyond just talking about a cure.
    We as a society have made great strides in the 20th century to go from talking about personal personal computers in the 1970’s to everyone in the modern world, having a hand held computer and phone.
    Now with that being said, what has the pharmaceutical companies done? Provided treatments not cures for diseases. Most of the treatments causes more problems in the long run.
    We have become a society dependent on treatments and drugs not cures. I guess it’s not profitable for cures!
    So you talk about patience , no I guess my patience is very thin.
    There is No reason why we don’t have a cure for what they call incurable diseases. We live in the 21st century and there is no reason we are still having to deal with 18th century diseases.

    • Frankie Perazzola says:

      Hi Jamie,
      I understand and agree with your frustration, for the most part. However, when it comes to curing or finding a treatment for a disease or rare disease at that, there are many elements that we as patients don’t see. It takes time, coordinating between different hospitals, a ridiculous amount of money, scientists willing to work on the disease in the first place, making sure each drug is safe for human use(not just animals), drafting enough patients to participate and a million other factors!

      With FA specifically, there is only 15,000 patients out of 7.5 billion people in the world who are affected. FA isn’t very well known as I’m sure you’ve had to lecture some of your doctors about it before. With having a progressive disorder like FA, it gets tricky to test a large number of patients because not everyone can complete the testing they require for measuring the outcomes of the drug at hand. Curing a genetic illness is difficult and the science behind it is a whole other ballpark. We are lucky to have the momentum in which things are going as far as FARA and the scientific research that is happening. We know the cause of FA and that’s an accomplishment in itself compared to other illnesses- some are completely in the dark and have no idea what the cause is. I’d be happy to discuss this further with you if you are interested. I understand where you are coming from-completely. But, essentially, we need to raise awareness, which can help raise funding, which can help find a treatment which then leads to a cure.

      Unfortunately, this process does require time and that’s frustrating when you feel like you don’t have time to wait. We don’t- but all we can do is keep participating in raising awareness and clinical trials to speed this process up. Have you participated in any?

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