If you are a Friedreich’s ataxia patient, it’s likely that you’ve felt like a burden on your loved ones at one time or another. Sometimes you even feel bad about hanging out with your friends because you know how much work it will be for them or how much help you’ll need. You constantly see others rolling their eyes or huffing short sarcastic breaths when something else needs to be done or when something goes wrong. It makes you feel horrible and you wish so badly that you could just accomplish that task yourself instead of constantly needing help from the people around you.
Fact is, you are going to require a lot more attention and help than others and there’s absolutely nothing you can do about it. It’s not your fault. Friedreich’s ataxia is a burden on your life, and unfortunately, everyone’s life around you, too.
You are disabled, no matter your stage of progression, which means you’re unable to do things the typical person can. Once you can mentally grasp that you will need that help and can be honest with not only yourself but your caretakers, that communication may become more clear, getting you the help you need in the way you want to receive it.
FA is something that can’t be hidden or swept under the rug — it’s going to be in your life whether you choose to accept it or not. It comes down to surrounding yourself with people who will listen to you and are willing to learn with you along the way. No one has figured out the “right way” to handle this life-changing illness, but it’s important patients understand that FA is extremely difficult for their friends and family, too.
Think about it: the people who love you have to watch you physically decline, day in and day out. Parents have to deal with the usual guilt surrounding your diagnosis (meaning they wish they could take it from you or feel horrendous for giving it to you in the first place — even though there was nothing they could have done).Your friends feel badly because you struggle with simple tasks that they don’t even think about. They may not know exactly what you have to endure on a daily basis and all the mental mind games you go through, but they do have a front row seat to watching your health deteriorate.
Try to Empathize
There can be a mutual understanding between you and your loved ones that can alleviate some of the frustration that comes with having a disease like FA. They will never understand how badly you want to do things on your own — how you want to be able to cut your own food, get ready in the mornings alone or even just go somewhere by yourself. But, patients won’t understand how physically and mentally demanding it is to take care of someone else. Having another life that truly depends on yours is a lot on any individual or any family.
So, while it’s going to be infuriating and frustrating some days, it’s just another aspect of FA you have to learn how to handle. The right people in your life will be around to support you because they want to. Be honest, be humble and be appreciative of the help you do receive.
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.