Saturday, April 17, 2010

Loving in the World of Illness

The relationship between a person and their chronic illness is very close.  Sometimes to the point of making their significant other feel like the third wheel in the room.  This is probably one of the hardest parts of being sick.

I wish I could say that love between a person with chronic illness and a person without chronic illness was something that fit together like peanut butter and jelly (I mean they say opposites attract right??).  Sadly, it's more like an oil and water situation - even though my boyfriend is a patient saint about it all.

I have had chronic illness for a long time, but I was in much less of a flare when I met my boyfriend (common-law husband).  I warned him about what he was getting into, but I fully believe he did not see it getting nearly as out of hand as it did.  Chronic illness isn't pretty.  It can kill any semblance of romance really quickly.  It is important to channel some of your tiny energy supply into keeping the relationship alive.

Here are my tips, even though I sometimes (more rarely now...) get lost in the occasional pity party:
  • Make the effort to shower, put on decent clothes, and some make-up at least twice a week.  I can't say I look very pretty when I'm sitting around in 3 day old pajamas (although my boyfriend just said none of this matters so perhaps I'm doing it to convince myself...).
  • Communicate!  Whenever we don't talk to each other minus life's distractions (TV, Internet, video games, etc...) we get really cranky.  And cranky doesn't translate well into the bedroom.
  • Try to find enthusiasm for the other person, even if you feel like you are being run over by a truck.  Relationships can't be maintained when they are that one-sided (as I feel like I'm being run over nearly every day!).
  • Snuggles (unless your skin hurts!).  Sometimes just constant physical contact can say more than words.
  • Keeping a daily journal - it really helps you go back and look at the problems you are having in a third-person kind of way.
  • Be considerate.  This is the one thing I have found with all of my relationships.  These are people who go out of their way to help you when you are down.  Do and say things that make them feel special (especially your mom and boyfriend - as they work above and beyond!).  
  • Avoid falling upon bitterness.  It doesn't help you, and it doesn't help your relationships.  
Obviously, I don't have all the answers.  This is the first relationship of my life where I didn't entirely push the other person out of the picture.  I want your suggestions - how do you keep your relationships afloat in prolonged times of crisis??

(Image from WeHeartIt)


Della said...

I have been married since I was 15. My hubs and I have been together for nearly 30 years! He has been w/me through so many flares, even very bad ones where I almost died. He has been a real trouper, and he is still my very best friend. I love him with all my heart. We have a solid relationship and can talk about anything. If he's feeling neglected he tells me....hey, um it's time! But only when he knows I'm feeling up to it. Sometimes with a chronic illness, loving and being loved can be a monumental task, but so worth the comfort of having your best friend with you always. Enjoy every second you have together.

Toni said...


These are all great suggestions. I'm going to keep some of them in mind myself and I've been married for a long long time!

I would only add one thing (which is already implied in what you've said). I've been sick since 2001. For the first few years, it was pretty much all we talked about -- my illness, how it affected our lives, etc. Then I decided it would be good for us to talk about other things. That really brought us closer. Sure, we still talk about the illness a lot, but sometimes we just ignore it and talk like we did before I got sick. It brings a bit of joy into our lives together.

I'm amazed at your wisdom about relationships!

Jamee said...

These are all wonderful suggestions! My husband and I had just gotten engaged when my health really started to plummet but I could not ask for a better partner to walk through this with! He is amazing!

Communication is definitely a must (like you have alluded to)! We both need to feel safe to voice our feelings.

Also still make time for date nights even if it is just a quick dinner at a local eatery and you make the extra effort to get a little dressed up. It makes such a big difference to take time for your relationship!

Keep the great suggestions coming!

Anonymous said...

Joe and I had a great time with each other and the boys for 16 years before I got sick. After sickness hit I tried so hard to be there for my kids that often when it was time for me and Joe I had no energy left. He understood and he was fine about it. Now Dan who is 22 is away at school, and Bill 24 works but still lives at home, and helps with the bills and the house. Joe works his regular job and 2 part-time jobs to keep up with the bills, but we still have "our time" almost everyday. We both have laptops and every evening we just sit together and do our computer stuff.
It is HARD to stop the urge to tell him how crappy I felt during the day or whatever, but he doesn't really need to hear bitching after working all day. We do lots of cuddling at night, and I let him do most of the talking. We just try to enjoy each others company, and a glass of wine or two always helps!

Here's to great Guys!!

Annie said...

It sounds like we all have wonderful men in our lives! I love the suggestions and the fact that I'm not the only one thinking about how to make the situation more tolerable for myself and my best friend :)

Sue Jackson said...

These are all such great suggestions...really great. I agree with you on the challenges, and I must admit, I don't always do well at remembering the things you've mentioned in your tips.

Like you said, it's tough to maintain any kind of romance when you're wrapped up in your own suffering. Even when things are OK with me, our daily life often seems like a never-ending list of commitments. It usually takes all of my energy just to keep up with the daily maintenance of life.

Thanks for giving me something to think about!


Sue said...

Thanks for another great post. It gets even more interesting (tough at times - fun) when BOTH people in the relationship have chronic illness.

Trying to live a spontaneous romantic life is something we gave up years ago. Now we literally have to schedule it in and work with the assumption that all the right stars must be aligned in order for date night to actually happen. When it does - it's great!! We've learned not to be too disappointed if one of us just isn't able to function well enough for fun and romance.

Rachel said...

I agree with Sue - life gets really interesting when both have chronic illness.

Thank you for your post - definitely another one to bookmark!

Dana Marton said...

No matter how wonderful our men are in our lives, they are human. They have stress in life too. I have been married almost 10 years and with Jim for 16 years total. Communication is so important. Although as chronicbabes, we tend to get used to life with a chronic illness (or several), because of this we tend to not always talk about how we feel or ask the other person how they feel. We think that we are keeping them from constantly paying attention to us, when what we really end up doing is taking the attention away from them. That can add extra stress. So my advice, to just build on what you said in your blog so well, communicate, communicate, communicate. Unless either one of you are psychic, you can't read each other's minds.

Heather said...


Great post! I wish I could add to this, but I'm trying to figure things out still, even after nearly six years of marriage! Even without chronic pain, relationships take work, and I think the pain forces both parties to work that much harder. Thanks for the tips!!!

Kim said...

I am so glad I found you and the rest of the babes;). Such a wonderful post and was just what I needed. Alone time is a must for us. Date nights are nice, but sometimes just going to the store without the little ones is a nice. Time to catch up without distractions. I always try to ask my husband about his day before he asks about mine. And I keep my complaints to a minimum, unless the day has been that crappy. In that case I give him a heads up, so he's not bombarded with my moods and venting. It really does take a lot of communication, teamwork and a boatload of patience!

shalunya said...

If I had to give you only one word it would be communication. You can work through anything if you can talk about it. You have to be honest with yourself and with each other. It's the only way to make a relationship survive. Best wishes and thank you for sharing.