So, how does having a neuroimmune disorder change your identity, and how does that impact your ability to connect?
When you get “sick,” as the six-year-old version of myself would put it, you are forced to take on some of the identity of illness. You never have to self-describe in any specific way, but how you navigate the world and the place you have in it differs from the way it was before.
Embracing A New Normal describes it well:
“For some, there’s a sense of “grief” that occurs. Grief for independence, for old relationships, for the “old life.” This grief can also accompany feelings of anxiety, complete overwhelm, and lots of questions about the future.“
I think it’s a common sentiment among those impacted that all we want is to get better, and for things to go back to normal. But the reality is that things have changed, and although it’s unfortunate, this may just be the way it is.
Instinctually, I put most of my life on hold after getting my diagnosis. I told myself, once I get better, then I’d do this, and this, and that. I waited, and prayed, and pleaded that I could just be normal again, that this body would just work for me instead of against me. In delaying all the things I wanted for myself, I became socially reclusive—I told myself, people will finally like me again if I was just better, if I could keep up and not get fatigued, if I wasn’t so mentally burdened by my thirteen-syllable diagnosis and traumatic memories of hospitalizations. I should not have waited to be a real person again until I was better, because I never got to that specific point. But I did get to a point where I am happy, where I have friends, where my body still has its issues but I’ve obtained some semblance of control over it. I can be alive and a real person, right now, and I don’t need to wait to get better.
Something that has always stuck with me was when GG DeFiebre wrote “I have adapted and have amazing people in my life and in many ways, I am happier than I was before TM. Life may be more challenging in some ways due to the inaccessibility of the world and people’s perceptions, and I certainly have bad days, but overall, I am quite grateful for the life I have.”
It’s hard to not spend some days pining for a perfect life, but making the most of your reality, and choosing to see it through the lens of gratitude allows you to get out of the darkness and step into a life worth leading.
The best part of accepting yourself as you are and living as large of a life as you’re capable of leading is that you do not have to be alone. As Lyd Lacey puts it, “Acceptance is easier said than done. If it were as easy as snapping your fingers, no one would be reading this. Aside from therapy, community engagement is perhaps the most helpful tool on the journey of living with a rare disease. SRNA offers peer connect and support groups, which are free and easy to join. Building meaningful relationships with people who are on the same journey as you cannot be understated. Regardless of how you choose to describe yourself, you are welcome in the SRNA community.”
We’re all on a journey to cope with what happened and to partner together to build a brighter future. You may be changed by your condition, but you are still wanted, and you are not alone. Having a neuroimmune disorder actually can allow you to make more meaningful connection to those who understand exactly what you’ve gone through.
You are welcome in SRNA, and you are never alone.
