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What do you wish you knew when you were diagnosed with FA?
Getting diagnosed with FA can bring a lot of emotions—relief, fear, confusion, and uncertainty all at once.
Many of us have learned things along the way that we wish someone had told us earlier.
This thread is a place to share those insights with people who are just starting their journey.
Some examples might include:
-It’s okay to take time to adjust emotionally.
-Good days and bad days are both part of the journey.
-Finding the right treatment can take time.
-Connecting with others who understand can make a huge difference.
-Advocating for yourself with doctors and insurance matters.
If you’ve been living with FA for a while, what’s something you wish you knew when you were first diagnosed?
For me, I wish I knew the different support groups available, so I would feel less alone.
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11 Replies
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I wish I knew how important working out would be to keep coordination. Once I was diagnosed I quit cheer instead of adapting to still do it. It was great exercise and coordination.
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Ah that’s a good one. And knowing how exercise and working out has long-term beneficial effects too.
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I wish I knew the people In my life who Would not support me and who would. I think I put some eggs in the wrong basket!
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I totally agree. This was a hard lesson for me to learn when I had friends and family members in my life who were not supportive or understanding of my FA. For a long time, I put a lot of energy into those relationships, hoping things would change. Eventually, I realized that I needed to stop pouring energy into people who didn’t truly care about me or make an effort to understand what I was going through. Instead, I chose to invest in relationships with people who genuinely support me, accept me for who I am, and show up for me consistently.
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Yes!!
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This is something that I am learning ongoing!
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I can totally relate and agree! It sometimes can be sad to learn who your true family and friends are, but also rewarding!
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I wish I knew how often I would be treated as a drug seeker, even when I’m asking them not to write for anything. I have pain management for anything pain related and they can do much better for me if it’s all in one place but I guess there’s way too many people that are into going to the emergency room or whatever for pain meds. It makes those of us who actually have issues and are not drug seeking look like those who do.
I just saw dermatology and when she came in, she was nice. The moment my husband left the room and she began talking to me with my words slurring she immediately got this disgusted look on her face and treated me horrible. And yeah, I’m reporting her but this is happening way too many times!!
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It makes me angry when people take advantage and “abuse” situations vs. the people who actually need the care!
I am glad you are reporting her! That is no way to treat someone.
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Unfortunately I relate! I got really bad panic attacks after covid to the point where I feel lethargic. Having FA, which affects the nervous system, makes panic attacks so much worse for the physical symptoms. My primary care doctor knows me super well and prescribed me Xanax for when I have episodes because I need something that will temporary block my nervous system for my body to calm down. When I was in the hospital for covid (I got it again) the doctors made me feel so judged for being prescribed Xanax and said I need to work on coping skills. It really hurt my feeling because I only took the medication like once a month if I couldn’t stop an episode by myself. They made me feel like a drug seeker.
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I am sorry you experienced panic attacks and had to deal with hospitals! I am sure it was alot to process, especially having to be prescribed Xanax to help you manage and cope with the pannic attacks.
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