When “Special” Hurts
Growing up with OCD, I felt like the only kid in the world who ever had this particular condition.
Other kids at my school discussed ADD and ADHD, and were often on similar medications, but no one other than me really knew what OCD was or what it felt like. In addition to dealing with a disorder that controlled much of my everyday life through constant obsessions and compulsions, I felt like I had to go through this struggle alone because no one really understood what I was going through.
My family were my greatest allies during this time, even though they also didn’t know what it felt like to grow up with this kind of mental illness. I was lucky to have them by my side, but even so, I felt strange that I had to explain so many things that were just a basic part of my existence to them (and any other, incredibly rare person who was willing to listen).
As I got older, I met more people who either had OCD themselves or also felt misunderstood by their peers growing up. Thankfully, it’s been years since I’ve felt so isolated, but a certain particularity of grief is bringing some of these old feelings back.
I am someone who, in therapy, wants to read every book about what I’m going through. I sign up for Facebook groups, read blog posts and essays online, and basically just spend a lot of time trying to find resources for exactly what I’m going through.
Usually, this counteracts the feeling of isolation I had when I was a kid. If I see articles or Facebook posts written by people going through an experience I’m struggling with, I don’t feel rare or like my difficulty is an unsolvable problem. Instead, I feel hope - if other people can get through this, so can I!
As soon as Nana got sick, I struggled to find materials for people grieving before a death - grieving someone who has essentially lost their mind and stopped being the person you knew and loved. Even with Amazon’s massive bookstore, I was only able to find one anticipatory grief journal. It helped me a lot, and I reassured myself that once the death did actually happen, I would be able to find more resources to help me cope.
In the weeks since Nana’s death, I have looked for all sorts of resources. It’s true that there are grief support groups online and in person, many books to read, and journals that I can use to continue my work from before her death. But there’s one gap I wasn’t expecting - a downside of sorts to the kind of relationship I had with Nana.
People always told me growing up - and still tell me - that I was so lucky to have a grandparent who cared so much about me. When I went to college, I was surprised to see so many of my peers losing interest in the grandparents they still had, or reacting surprisedly to me receiving letters from Nana that came with love instead of a check. Most people I knew who had living grandparents as an adult weren’t close with them, so when they died, it was more about losing a particular family tradition or a source of extra income as opposed to a close relationship.
But for me, Nana has always been one of the closest people in my life. She’s been a huge part of my support system since literally the day I was born, and I wanted to see how other people my age learned to live without a key part of their support system.
It’s here that I realized that, just like when I was growing up, I had an unusual situation that no one else around me understood.
Even with all the books out there - including ones that feature sections for different kinds of loss - none of them mention what it’s like to lose a grandparent.
Articles are few and far between, and most of them deal with helping small children.
Most support groups I’ve found don’t accept someone unless they have had one of three kinds of loss (parent, spouse, or child) or have lost someone to a specific disease (Nana’s was rare enough that there isn’t really much out there).
Even my therapist had to advise me how to adapt advice from books and articles written for people in other, more common grief situations to fit my rarer one.
I understand that I’m lucky to have had such a close relationship with Nana in my life, but the recurrence of this feeling of being “special” doesn’t exactly help. I wish there were more resources for people my age - more ways for those of us who were lucky enough to have a grandparent who really, truly loved us to figure out ways to move forward in the grieving process and in life.
As a writer, I’ve found a solution that works for me - I started exploring my grief through an individual writing class featuring 30 days of prompts that can fit any kind of grief. Even though the person who wrote the class lost her spouse, the prompts get at the feelings that are similar even in different kinds of loss. And, just like my OCD blog posts, I hope to share some of them one day so that other people might not feel quite so alone after losing someone who meant the world to them but wasn’t a “typical” relationship.
Michelle Cohen, a writer in the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.