An Unwelcome Visitor Returns

There are some things in my life that, when they return, fill me with dread. Income taxes, my next dental check-up, another horrible formulaic ‘Mission Impossible’ movie starring Tom Cruise…and my wife’s RSD. She had about a year and a half of relatively mild symptoms, but unfortunately, her RSD seems to have come back with a vengeance. I’m sure many of you are familiar with this cycle. For me, it certainly takes a psychological toll, as it does for my wife. During the good times, we don’t think about RSD coming back, but we both knew in the back of our minds that this time would come.

One of the points of this blog was to illustrate how isolating RSD can be, and how it drives a wedge between partners and families. Thanks, by the way, for all of the comments. I started this primarily as an online diary of sorts, but I am definitely glad that some people have found this helpful, or at least as validation for what they already knew. A quick primer on my wife and me: When we married in 1998, she had a constant tingle/numbness in her left hand that, over that last 13 years, has moved to her right arm, and down into her lower extremities. She has experienced periodic changes in her skin (color and temperature). A couple years ago, she described RSD as if someone had replaced her blood with gasoline, and lit her on fire. Is the purported 80% divorce rate any wonder? How is an RSD sufferer expected to live a ‘normal’ life while feeling like they’re on fire?

My experience has been that one of the ways RSD isolates partners is through exclusion. My wife is not physically able to participate in many of the family activities that most people take for granted. The result? Unfortunately, our worlds spin on different axes now. My life is defined by many of the same events that serve as guideposts for others – work, domestic stuff and kid stuff. The reality after 13 years is that, I had to take my own life back. As much as I love my wife, and as sorrowful as her disease makes me, I could not let her RSD define our marriage or our family. There is nothing I can do about her pain. I can be there to listen and periodically get ice packs out of the freezer for her spine pain, but that is where my super powers end.

In my world, people don’t understand RSD, and frankly, I’m getting tired of explaining it. When I attend some event that my wife cannot, I find myself explaining her absence.
Person: Hey, where’s (insert partner name)?
Me: Well, sometimes she has a hard time getting out of the house…
(Engage Auto Explanation mode)
(Loading_file_RSD 101\simplified version)
As profound as the symptoms of RSD are, sometimes we forget that, to a stranger, it is completely invisible. Nothing about my wife’s appearance would suggest that she has an evil, incurable disease. So, it seems proving to folks that you are not a hypochondriac is part of the battle. I can think of no other disease where the sufferer must validate for people that they have a disease.

So, while I am part of her RSD world, I must also exist in the world where you go to work, pick up groceries and flip off jerks in traffic. Moving between the two is not easy. I don’t think it takes a strong person to live with an RSD spouse, nor do I necessarily think a partner who leaves an RSD relationship is selfish. I do think it requires loving that person to such a degree that you may question what you are doing from time to time. I think the love for that person has to be so strong that you are willing to endure even when things really suck…and suck they do sometimes. Is that 80% divorce figure accurate? Who knows…I guess that depends on how much credence one puts into information from the internet. To be honest, marriages seem to be disposable in our society anyway, so it’s not unthinkable that 80% of RSD couples really do divorce.

Reality time: Do I get tired of hearing my wife complain about her RSD? Well, yes. Do I sometimes feel that all we ever talk about is RSD? That’s a big 10-4.
However…
Do I love my wife enough that hearing about her pain, and talking about her RSD is something that I do because I know that she needs me as a partner? You’d better believe it. Look, sometimes I mourn the way our marriage used to be, but our reality is here and now. She has this thing…it’s not going away, but a life without her is just not an option. I seldom use the term ‘soul mates,’ but I’m pretty sure my wife and I divorcing would rip a hole in the fabric of space and time. My universe wouldn’t feel right. So, as much as I hate her RSD and how it has seeped into every facet of our life together, I know that the bond between us is strong enough to withstand this thing. Plus, she’s pretty cute, so…

Her RSD is bad right now, but we both know it won’t be that way forever…it just feels like it. Thanks again for the well wishes. I hope that this helps you in some way.