The ultimate test of any type of relationship in my life began the day I was diagnosed with FA. Friendships, family ties, and intimate relationships were all put through the ringer once I knew I was facing a life-shortening illness. Everyone copes differently with bad news, and miscommunication is one of the obvious results when trying to maintain the usual relationships.
People always assume that you want to be left alone or don’t want to bring up illness during conversations. There is a time and a place for that discussion, and sometimes I don’t want to talk about it. But I’ll make that clear. If I run into someone at the grocery store or out at dinner, chances are I won’t discuss Friedreich’s with them, but otherwise, I truly am an open book.
Having something like FA puts your friends and family in a position where they need to make a choice. They need to choose whether they want to be a part of your progressive journey. You’ll learn if they are comfortable pushing you in a wheelchair or being able to cancel plans last-minute, knowing that your fatigue dictates what you can do throughout the day and that things probably will change. Or how large groups tend to increase your anxiety and decrease your self-esteem, so those become something to avoid.
The people in your life are going to have to help you to some degree, and you’ll find out who is really willing to do so. You just have to remember that not everyone you want in it will be able to handle your life, and that’s OK. It will hurt to cut some people out, but if they cannot come to terms with what you are facing, you have to be able to distance yourself from them.
We already have so many hardships that we face as patients, and having to constantly worry about someone else’s emotions, comfort level, and coping mechanisms can be exhausting. It’s not something I’m proud of admitting, but it’s honest: Most relationships I have take the back-burner because I have to focus so hard on my own personal tasks of staying well and maintaining my progression. Sometimes, if I hang out with friends later in the day, my attention span is extremely short and my social cues are almost gone. I can feel myself waiting to speak instead of listening, and I can also feel when my eyelids are closing, perhaps during a conversation. I’m not doing it intentionally, but I can feel how exhausted I am.
The hardest part I’ve had to experience already is letting go of people who are not supportive of the life I’m leading. I’m choosing to be an advocate and go public about my journey with FA. That means attending and speaking at fundraisers, gaining a bigger following on social media, and dedicating my body to scientific research. Some people are scared or resentful about me being in the public eye or being comfortable with telling my story. That’s completely OK. My life is my life and I hope to one day find a person willing to share that journey, or even gain 100% acceptance from my family. But until that person comes along or that acceptance is apparent, I”ll be happy figuring myself out and learning what else life has to offer.
As patients, we have to understand that FA not only affects us, but also involves our entire circle of relationships. And no matter who you think will undoubtedly be there, they might not. Be honest with yourself and stop making excuses for others to help avoid that miscommunication. Hold other people accountable as well as yourself for your actions and make sure to acknowledge when you need a little more help than the day before. It’s a process we have to endure and it’s absolutely horrendous, but at least you will figure out who truly has your back along the way.
Note: Friedreich’s Ataxia News Today 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 other 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. The opinions expressed in this column are not those of Friedreich’s Ataxia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.