Lupus and the Hard Questions, Part II

Questions 1-5 are in the previous post.  Moving right along:

6.  What about sex?  Well, what about sex!  It may take a little more work, both to keep your self-esteem intact, and do the practical things (like maintaining your exercise capacity and saving energy for sex) to keep yourself interested.  Frankly, I think if there’s a diminution in your sex life and you’ve dealt with all the issues like pain and flexibility and endurance, your next step should be to look at the psychological stuff. 

7.  And the corollary to number 6:  what about my relationship?  Well, any chronic illness in the family is a test for a relationship.  Statistically, men leave sick wives more than sick wives leave their husbands.  Illness may bring out qualities (good or bad) that you never saw before in your partner; it may do the same for you.  That being the case, commitment has to be extra-strong to keep a relationship intact.  I think that the more the partner is willing to learn about the illness and understand why and how you are affected by it, the better.  If you can help the process along by reading lay information and sharing it with your partner, that’s great.

8.  Oh yeah, and the kids-will they hate it that I’m sick?  Kids are flexible, adaptable creatures who love to learn.  They need to know the truth about what’s going on, tempered for their age and understanding.  Children who don’t hear your explanation will certainly imagine something much worse on their own.  Be prepared for their questions.  Be prepared for changes in your energy and endurance.  I was very sick when my daughter was in second and third grade, and I was a single parent by then.  She missed out on some things like the family tennis outings we had when she was younger, and learning to ride a bike.  On the other hand, we kept the house stocked with craft supplies and games, and could have a fabulous time without my being able to run or swing a racket.   During those years I went to Girl Scouts and served as her troop leader every year.  If I had to load up my wheelchair and go to meetings in the chair, so be it.  I cheated and took extra prednisone to make it through camping trips, and I don’t recommend doing that without consulting your doctor.  I’ve paid for it in side effects. 

     Recently my daughter told me “I’m glad that I know how to be around sick people.”  I have never seen her miserable or angry that my illness was affecting her life.  That is a blessing.

9.  Is money an issue in treatment or living with the disease?  Ha ha ha.  Is this America, land of the less-than-universal health care system?  You will use all your benefits (and I hope they include a good disability policy) and wits in fighting this disease.  During the course of the illness you will need numerous tests, a number of drugs, possibly physical therapy, possibly hospitalization…if you are fortunate you will continue to work.  Statistically, money is one of the most common thing for marriage partners to argue about.  If your income drops and your medical expenses increase, that’s another huge blow for a relationship.  Chronic illness rarely produces any improvement in your financial position. 

10.  What about new relationships?  I think the real challenge here is to expect the same out of a partner as you would if you didn’t have lupus.  What I mean is, it’s easy to feel damaged or imperfect or undeserving, and settle for a partner that isn’t appropriate or adequate.  Do whatever you can to prevent that.  ‘Nuff said.

11.  Will I have friends?  Hmmm.  Did you have friends before?  Okay, ignore that, it’s 3 a.m. and I’m punchy.  Some friendships are based on shared interests (you know, your softball team, your knitting group, etc.).  If you can no longer pursue the activity that the friendship was built on, that relationship may suffer.  On the other hand, if there is something deeper acting as the glue, you may have a keeper.  The biggest toll I found on my own friendships was my difficulty with being unreliable.  Lupus is a relapsing, remitting disease, meaning you go back and forth from being sick to being better.  Moreover, the disease and the medications may cause symptoms that develop quickly and unexpectedly, ruining your carefully planned days with your friends and family.  When friends take it personally, the friendship may be doomed.  Don’t forget that we are capable of making new friends.  Changes I’ve made since I was diagnosed have brought me in contact with plenty of new people, and I have made a number of solid new friendships in that time. 

     There is a caveat to be aware of.  Women tend to base their self-worth on what they can do for others.  We feel that we are not worthy friends if we can’t take over a three-course meal on our bff’s birthday, or care for their kids when they go out of town.  Forget all that.  Your worth is not measured by how much physical labor you can accomplish.  You may do more for your friend by having a listening ear or a kind word on a bad day.  Likewise, your friends may value your sense of humor and raucous laughter much more than the number of days you put into car pool.  Give yourself a break. 

I’m going to publish this post without editing, an unusual move for me.  Tomorrow-well, later this morning-I’ll reread it, and if it all sounds like so much BS, I’ll try to improve it. 



2 Responses

  1. hey well said!!!
    i have had this thing for 16 years, and it’s taken me a while to learn that moving slower than everyone else (working less, sleeping more, taking more down time, not being able to do as much for people) can actually make you an asset to your friends and family in a way that is more valuable, or as valuable as baking a cake or hosting a dinner (which is a big ordeal when you’re lacking energy).
    i’m now the most sane person in my family, and more attuned to and less afraid of emotional situations and conversations than anyone else, even the extended family. and i used to be the problem child!

  2. Carla, you sounds a lot like my sister, too. 8^)

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