Looking back on the day I was diagnosed with NMO, I realize it was all a whirlwind of emotions and pain, both physically and mentally.
There's no playbook for figuring this out
When you’re diagnosed with any condition, especially a rare one, they don’t give you a playbook on how to live with it. After I reached a point where I didn’t need hospital care, I left feeling more lost than I did when I walked in. I wasn’t prepared to accept this disease as a part of my life.
I've learned to live
If I’m being honest, I’ve never really accepted it; I've just learned to live with it. However, accceptance comes in many forms. Everyone’s experience with a rare diagnosis isn’t the same, even those fighting the same disease. It’s easy to measure my journey alongside of others, sick or not. I look at healthy peers my age and think of what I “could” or “should” be doing, putting thoughts into my head that I’m not good enough, or competent enough. I know, of course, this simply isn’t true, but being constantly barraded by social media and endless societal standards, and comparing all of that to what I thought I was supposed to be, can become difficult.
My life was changing
When I took a step back to look at it from a grander perspective, I realize now that my life was changing in those early days. There was no going back to how it used to be. After being diagnosed, my hospital room was constantly filled with nurses and visitors. As I lay in bed paralyzed, I finally had the room to myself. "This is my life now," I thought. Of course, over the weeks my mind would revert to what life used to be and how I used to live.. Then that heavy reality set in and I had to remind myself that life was all in the past. I then began the mourning process. That’s the thing about accepting your illness: you have to mourn what was so you can accept what is.
Beginning the mourning process
Being diagnosed at a pivotal time in life was a good thing and a bad thing. I knew a life before sickness, so losing that life I had worked so hard for broke me. I had to mourn friendships that couldn’t withstand the ever changing landscape of my disease. I had to mourn family members who were not reaching out. I had to mourn the active lifestyle of hiking to the tops of mountains, and cliff jumping into 30ft water. I had to mourn not being able to attend college or move into my first campus apartment. Instead I had to watch my teammates win meets without me. I watched as my roommates filled my bed in our new apartment with another person; one who was not me. I had to call off many trips, dates, and parties all because I couldn’t bear to get out of bed due to overwhelming pain.
I found advocacy
I sat in this space for about a year. I was constantly looking backwards and filling my thought space with "what ifs", wishing I could be the person I was before NMOSD came into my life. Then I started posting my story on the internet. That’s when I began to find my new purpose: advocating for those who live with rare diseases.
It wasn't all bad
In finding this new purpose, I began to understand that me falling sick was not a completely terrible thing. Of course nobody wants to spend their life living for treatments and medication. However the amount of people I’ve been able to touch through telling my story makes it all worth it. Thus, my journey with acceptance began.
I can now express gratitude
I can look back now and be thankful for the memories I had before NMOSD. This doesn’t mean I don’t get sad sometimes thinking about what I could or should be doing, in comparison to my peers. At this point in my journey, I have had to learn to accept a lot. It doesn’t get easier, it just becomes more manageable.
There's no "one-size-fits-all"
Not everyone’s journey to acceptance is the same and that is completely okay. There is no playbook on how to feel after being diagnosed with NMOSD. Allow yourself the time and space to be with every thought and emotion. It’s so important to feel all the feelings, good or bad. It’s no race to accept your life changing. Do what works best for you while seeking advice from others that are further along in their acceptance journey. Find your purpose through diagnosis and savor every moment as you fight this disease.
Does Avery's journey with acceptance resonate with you? If so, how? Leave us some thoughts in the comments.
Were you misdiagnosed, prior to being diagnosed with NMOSD?