I am currently recovering from my surgery on Friday so I am so thankful to have some wonderful e-friends stop and guest post in my absence! I met Cheryl through the blogging world and am so glad that our paths crossed! She will be sharing her experience with chronic pain and relationships as well as some tips for both the spoonie and his/her partner on keeping your relationship strong in spite of pain! Be sure to check out her blog!
My name is Cheryl and I’m usually found ruminating over at Confessions of a Rambling Mind. I suggested two potential topics to Jamee for my guest spot and she suggested I “talk” about the complexities of balancing relationships with chronic pain. Like Jamee, I’m also an endo warrior and have had a terribly painful back problem for two years (with an OR visit of my own on Aug 8). I was going to toy around with a prior post on the subject but decided that the evolution of my life in the past months meant a new perspective and a new ramble made sense.
I was diagnosed with endo in 2003, after years of increasing monthly cramps gave way to constant pain that had me passing out at work. I’ve also had migraines and hives for a long time and the more recent back injury, along with just a weak immune system (likely b/c it is busy with a misguided battle against my body itself). At the time I was diagnosed with endo, I was dating X. We later married but that ended in 2010 after fizzling for a while. I’ve since found a wonderful fellow (MM on my blog for Military Man). This is my come-from place and my rambles here will focus on romantic relationships but much of it applies to everything from friends to co-workers.
Communication is key to any relationship but chronic pain takes this to a whole new level. The pain had evolved in the time I was X but it had become a true part of my world by the time I met MM. It was important to me that I never hid that. I told MM very early on that I come with this wrinkle. It wasn’t all of me, but it was a part of me. I couldn’t leave it behind and I did feel a bit of guilt making someone else join the battle since it isn’t fun. It is one thing if pain comes in with a relationship in place, but I do think one needs to be honest and clear if it is already present. Hiding the ball never helps anyone since it will come out eventually and your partner needs to know what they are taking on if the relationship is going to become serious.
This raises a tricky point. The partner needs to be honest too. It is hard supporting a partner in pain. It will impact the relationship in so many ways. For me, pain means life takes so much more energy for me than it might for others so I’m often tired. I am not someone who is energized by crowds so I need a lot more quiet home time than others. My partner needs to understand this. And truly accept it. He needn’t stay with me 24/7, I’m all for him going out with some buddies, but I’m not the most social gal naturally and the pain exacerbates this. It also means I can be whiny at times and I need extra TLC. This is reality. And, the tricky part, my partner needs to truly decide if he can handle it. X admitted he considered leaving when it became clear the pain would be a third player in our lives but he didn’t want to be “that guy” who left a sick girl. Well, my message to guys facing that dilemma, it is FAR better to be that guy than to pretend it. We know our pain is, well, a pain. Sure, we’ll be sad if you leave but PLEASE leave if it won’t work for you. Leave before the Big White Dress. The patient’s job is to let you know what you will be facing (assuming the pain pre-exists), it is the partner’s job to be honest with himself (or herself).
Likewise, a partner needs to understand what they can and can’t do. There are little ways you can help, whether it is coming to a doctor’s appointment, taking on more than a fair share of chores, or giving a backrub. But, the partner needs to know that they cannot fix it. And that the patient doesn’t expect them to (if you do, you need to check your expectations). It is always hard to watch a loved one suffer and to be unable to take the pain away. I think this is even harder for men who are raised to be “fixers,” especially with their partner. As a supporter, you need to learn to accept this limitation. If you don’t you’ll go nuts. And it won’t help the patient. I appreciate the little nice things that help but I’ll feel guilt (okay, more guilt…some is always there) if you can’t accept the reality that you can’t solve it.
I don’t want to ramble too long, but I do have one more point and it is one that goes beyond romantic relationships and even applies outside the pain world. I stumbled upon a phrase many years ago and it has become a big part of my world. Pain, and lots of other things is NOT an excuse, but it IS an explanation. When I knew I was having a bad week, I’d let people know (especially those below me on the work food chain since stress trickles down). I’d tell them in advance that I might be a bit short with them. I would NOT excuse my actions but I did offer an explanation. Likewise, I do snap at MM when the pain is bad. A little annoyance will set me off, something that would normally be a tiny bother can set me afire. So I try to be honest. I warn him in advance of a bad pain day or follow an eruption with the explanation that I am fighting pain and on edge. It isn’t always a blanket apology since I may be truly annoyed about something valid, but I do apologize for being overblown. I do not think overreacting to an open cabinet is something that should be totally excused by my pain. I still have to be a good partner and a good person (or a good co-worker, etc). But the pain does explain being on edge and gives it context.
I like Jamee’s blog title. Not long before I stumbled on this site, I was talking with someone. I had a procedure the week prior and said it led to a few bad days but I was “back to normal.” He laughed, shook his head, and said “You normal isn’t normal, hon.” A chronic pain patient has their own level of normal. It simply is. It is our job to help others understand this and to manage it as well. It takes the right partner to join the battle. We are VERY aware of this and, if you are the right person to fight at our side, we’ll be more grateful than we can really say. Thanks, MM (who is taking a whole week off when I get home from surgery to be my nurse and my designated reacher, lifter, and bender). And thanks to all the others who make a complex life so much brighter with their love and support.