No matter the circumstance, it makes sense to maintain relationships with those who are in the same, or in a similar, situation as you are.
You can tell someone until you are blue in the face about your symptoms and try to explain exactly how FA makes you feel, but unless they share the same gene mutation, they’ll never fully understand. Surrounding yourself with others who completely get you without any explanation is essential when trying to accept your situation and learn how to move forward.
Social media has been a blessing for connecting those who suffer from rare diseases, including FA. There are tons of support groups on Facebook, sites like Friedrich’s Ataxia News and patients’ personal blogs with numerous stories and experiences that you can probably relate to. If you’re looking for information on social media, #cureFA is a hashtag most people use to help others connect.
Having fellow patients in your life can be an invaluable source of information — especially if their disease is more progressed or they’ve simply had it for longer. This information can often prove vital in dealing with your disease as it progresses, including tips and tricks to help you manage certain daily tasks. It helps to be open and listen to how others have handled their progression.
Depending on your age, stage and personality, it may seem easier to shut down and distance yourself from the community. It’s difficult to meet others who have what you have and to see them struggle — a struggle you know is in your future.
Ignorance can often be bliss and feeling that way about your disease is totally understandable. No matter how tough it may be to interact with “your future,” it gets a whole lot easier to deal with some of the mental and emotional challenges when you have a support system filled with people who get exactly where you’re coming from.
Try to reach out and make an effort to join the community when you’re ready. You’ll find yourself wishing that you had done it sooner.
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.