Dad and I at a concert one year after my diagnosis
Aside: Recently, I’ve been posting every other Tuesday morning for the sake of consistency, and I’m grateful it’s been working. Since I don’t want to lose the momentum of this topic or the thoughts I’m asking you to share, part 2 will be posted Wednesday morning.
Ah, the dreaded topic of dating with a disability. It’s amazing that so little has been written about the topic of Dystonia and dating. The intention of this post isn’t to put a negative spin on this issue by any means. However, in order to identify the solutions, I’ve learned I need to identify the problems first. Then we can brainstorm how to make life better for all of us.
I’ve been single for 3 1/2 years, and while I’ve been out on dates here and there, they’ve typically never gone beyond the first date. Thus, I didn’t unveil “Diagnosis Cervical Dystonia”. Seriously, when do you reveal to your potential partner all those attractive qualities he undoubtedly can’t live without? That you can no longer work, your income and life isn’t what you dreamed they would be, and that your need for support (in so many ways) may be greater than what he’s used to. It’s certainly not something I advertise on my online profile. A level of trust has to be established before I even utter those unknown words, Cervical Dystonia.
When my symptoms first began in 2010, I was already in a serious relationship. During the additional 3 years we were together, I became painfully aware of many needs that weren’t being met by this person. Giving yourself time to heal from a broken relationship is always difficult, no matter the circumstances. For me, after realizing I chose to stay in a relationship with someone who didn’t even try to be a caregiver or even meet my needs halfway, it became very daunting to find someone I trust who cares enough to do just that.
In a very literal sense, dating is like a type of dystonia. A myriad of feelings spasm back and forth. The stress, time and energy that are a part of getting to know someone new can be the worst of my migraines. Demands that seem unreasonable become the intense twisting of my head to the right, with no possible way of centering it again. While not all parts of dating are negative by any means, when one person has a disability, it can be very difficult to understand what it’s like to walk in the other person’s shoes. In both partners’shoes.
Today, I think about what I would want a significant other to know about my Dystonia and how it affects my daily life. There are so many emotions attached to this neurological movement disorder, in addition to the physical challenges of becoming romantically involved. While the physical challenges are very real, it’s the recipe containing all of the emotional ingredients that I want to focus on.
First, let’s add a few tablespoons of guilt. When I only have one doctor’s appointment in one week, I feel guilty that I haven’t done more. However, I also know how much energy I invest every day just to survive: filling out forms for Long-term Disability, Social Security Disability and both of my pension funds; fighting continuous uphill battles with the government to actually get my SSD approved; paying bills; regularly contacting my doctors; caring for my furry kids; and maybe meeting up with a friend if my body agrees to it. When someone asks what I’ve done on a particular day, it doesn’t seem like I’ve accomplished anything at all if I think about it from their perspective. If I told them any of the items listed above, they’d sound so mundane. “Well gee, today I did a few dishes, took a bath, and made some food for my dogs.” Normal activities don’t sound like things that actually involve stress, pain and work. So, that voice of guilt lingers in the back of my mind, even though I know I’m doing everything I possibly can on any given day.
Next, mix in two cups of insecurity. It’s nearly impossible for me to plan a day like most people. I need to know schedules in advance so that I can plan the rest of my day around those events. As I’ve written many times before, I can only do so much in one day. If I’ve already maxed out my energy and pain levels in the morning, then I can’t possibly do anything later on in the day. Plus, I may not be able to follow through on a plan anyway, if my pain has already exceeded my average level of 7 out of 10. How can I feel secure when I never know what each moment is going to bring?
That same feeling of insecurity applies to how I feel about myself around other people. It’s really hard to know I’m not contributing to a relationship in the way that I once could and that I may need to rely on someone more than they rely on me. I may need more words of affirmation when he isn’t physically present to assure me that everything is alright. That I’m alright. That he acknowledges my existence, especially when it may be difficult for me to do so. And even if life isn’t alright at that moment, we’ll get there together.
Of course, I don’t want to burden someone with my physical limitations. But I do want to find love, and I do want to find someone who is proactive in helping me solve problems that allow me to engage in activities I was once passionate about. To find that person who is conscious of the pain I may be experiencing in any given moment, and who takes an action to make it less painful. To find that person who can understand there are days when my emotions may be all over the place and how significant it is for him to simply be present with me while holding my hand. And to find that person who is aware that my inability to focus and remember things at times has nothing to do with me not being interested enough to listen. When immersed in chronic pain, these are all natural consequences.
We haven’t finished our recipe just yet, but I’d like to know this. What emotions do you experience as the recipient of care or the caregiver in a loving relationship? Come back tomorrow so we can start creating our collection of recipes for success.