Feeling Stuck Since My Diagnosis

I feel stuck since my neuromyelitis optica (NMO) diagnosis. My life has been nothing but a whirlwind of constant change, lack of room for routine and feeling sedentary.

After I was diagnosed with NMO a lot changed. My hopes, my dreams and ambitions, what I thought my future would be, what my doctors were telling me my future would be, everything.

I think I’m at the point now where I know where I want to go in my life, but I don’t know what to do to get there. I know how I want to live my life, but I don’t know the steps I need to take to live it.

Chronically ill

The chronically ill often spend a lot of time in bed, and on my bad days I can’t help but fight the feeling that I’m not doing enough. I’ve always hated that about myself. I’ve never been able to give myself the grace that I know I need. I really have been feeling stuck in that feeling of not doing enough.

Through therapy and self-reflection I still find it hard to come to the conclusion of why small measures are never good enough for myself. It’s something I’m desperately working on, but I think feelings like this don’t come with a rulebook or manual.

When we are diagnosed with rare diseases like NMO, they don't send us home with paperwork on how to fight the inevitable feelings of chronic loss and chronic pain. It’s not something you can simply google and find an answer to.

I’m here to let you know that it is completely okay to feel like being diagnosed with a rare disease flips your world upside down. It is hard to get past that feeling, no matter how much time has passed since you’ve been diagnosed. I know it’s easier said than done, but there are measures you can take to lessen the prominence of that feeling. I think it’s important to note that this feeling may never fully resolve, and that's okay.

Moving past feeling stuck

Write down every accomplishment

We can often get distracted with what we aren’t doing, instead of celebrating what we have done. When you take the time to appreciate where you have gone, it inspires you to push forward with a more optimistic mindset.

Start a social media page dedicated to your illness

I started my medical Instagram page shortly after being diagnosed. This has not only brought me amazing opportunities, but it has also allowed me to connect with other people across the globe living with NMO and other rare diseases. This has made me feel less alone.

Sometimes it’s been like a diary to be able to speak freely about your story without feeling stifled.

Join a support group

Support groups have helped a lot when I feel stuck. A lot of people are going through different stages and struggles in their rare journey, and some have tips to share with others (that just may help you too!).

Goals

Most importantly for me, it’s a great help to create a vision board of the things you want out of life. Seeing a reminder every day will give you the opportunity to be reminded of where you want to go so that every day is a step towards that goal.