Just so you know

All right. I have ideas. I think about stuff. So here is the spot for stuff I'm thinking about and want to be able to share more broadly and possibly promote. Like I have time for this.

Everything is provisional at this point and subject to change in the future - as far as the blog is concerned. In real life some things will remain unchanged.

Also, our children are not really named Lenny and Linus. We are not that cool.

Feel free to share, rant, disagree, but please remember that I'm an actual person who tries to be respectful. I'd love it if you are and do to.

Thursday, March 6, 2014

How to Bless a Mom with Chronic Illness: Listening

I've been mentally trying to compose this post since I promised to write it a few days ago and again, I've realized that it's a huge topic.  The question of who these moms with chronic illness (MWCI) are should be addressed at least briefly.  And then I found myself constantly wanting to explain some of the realities of life with chronic illness to my imaginary audience as I juggled pieces of the post. (While trying to deal with the craziness of a sick baby, a sick self and a sick husband.  I guess my brain uses this as a kind of escape valve?)

So, I'm going to start by focusing this post on the best ways to listen to a MWCI because this is a HUGE way that anyone, mom or not, can bless her.  Also because it's not as easy as it sounds to begin with.  I have encountered listeners with a variety of skills and abilities over the years and I realize now I've been keeping a mental catalog of  what the most effective ones have done best.  Listening involves a response, and that's where it gets tricky.

On the point of who MWCI are, I will say that I am most familiar with the circumstances of moms with a variety of "invisible illnesses" such as Chronic Fatigue Syndrome, Fibromyalgia, migraines, and depression.  Other than fibro I have experienced all of these personally.  I think that what I am going to share could apply to a wider range of illnesses, though.  Mostly those that have fatigue as one of the major aspects - thyroid problem, heart conditions, digestive disorders, autoimmune conditions and arthritis are a few that come to mind.

All right.  Tips for listening to a MWCI:

Believe her.  This may seem obvious, but it doesn't always happen.  Some of these illnesses are not well understood by the mainstream medical community.  Chances are we have been to several doctors and gotten very little help or information.  Chances are that we have talked to a few doctors who looked at our "normal" test results and cast doubt on the reality of our struggle.  Also, over time we may become champs at putting on a happy face and playing the role of a "normal" healthy person.  So it may be natural for people to be surprised when we share the extent of our struggles.  But we are often very sensitive to any suggestion that what we are saying is exaggerated or untrue.  Even if you are meaning to encourage your friend by telling her that the situation may not be as bad as she thinks the words can sting.  She may feel that you are implying that she doesn't know the reality of her own life or that she's trying to get attention.

I don't want to scare anyone off at the beginning, but sometimes us MWCI have some burns on our psychological skin and need some tender care to help heal them.  Treating the information we share with respect - believing us, asking open-ended questions that allow you to understand the situation better, taking time to listen carefully and clarify if needed - these can all be helpful.  You may want to make a statement like "I'm so sorry you're dealing with this.  I'd like to understand better." It may help clarify that you do truly believe but would like to know more.

Remember that she has lots to share besides her experience with illness.  Sometimes the illnesses we deal with have a profound impact on how we live our daily lives.  We may feel that up front we need to share some of these to be understood and "known."  Or we may prefer to get to know someone by sharing other information first and feeling safer in the relationship before we get to the health related stuff.  Possibly you've known this person for a while and are just now learning of her health struggles.  I wish I could give you a formula for when and how much a friend may want to talk about her situation, but it's different for each person.  The key is to be sensitive to the need to talk about other topics - both to relieve the pressure of personal revelation and to give her the gift of a balanced relationship.

Because:  MWCI need friends.  Some may start their health journey with a wide range of social contacts but I find that these illnesses are often isolating.  We are no longer able to join fully in the social scene we once enjoyed.  We may make plans but find we have to cancel.  We find people drawing away from us because they are uncomfortable with the illness or because they don't know how to fit in to the new reality.  We often don't know how to help others fit into either, but we need your friendship so much.  It most likely will need to be a process of trial and error, with much discussion, to find out what will work best.  Adjustments may need to be made in terms of how often, or for how long you spend time together.  Places or ways to communicate may need to be flexible.  Options that have been helpful for me have included:
  • Keeping in touch on the internet (this link deals with how people with chronic illness often keep in touch with each other online, but I've also found it helpful for keeping in touch with healthy family members and friends) or by phone.
  • Meeting at public locations like church, the library, the mall, restaurants, or outside places like a park.
  • Visiting at my house or theirs.
Speaking of church, if you share the faith of your friend with chronic illness please be aware that MWCI have a variety of experiences with their faith.  I think this falls into the "listening" category because it's a topic that may come up in discussions.  My experience with this is pretty much exclusively with Evangelical Christianity, so I'll share what I know about that.  Some find that the promises of  Scripture are comforting and encouraging and are able to cling to them through the "valleys" of poor health.  Others (me included) struggle to understand how this time of struggle fits with a loving, compassionate God.  Sometimes the weight of unanswered prayer can make it hard for us to approach the Father with our needs and concerns.  It can be very hard for MWCI do deal with with statements that imply that if they had more faith or prayed more their situation would be better.  Some have found the assurance that "God does not give us more than we can handle" comforting, but personally I find it to be unsupported in Scripture and a false expectation.  If you discuss matters of faith with your friend you may find that the ideas that are comforting to you fall short for them.  People who have been able to treat this situation with a gentle respect have been a big blessing to me.

It's good to remember that MWCI have usually done a lot of research about their specific condition.  She is probably not sharing with you because she hopes you will be able to provide her with that key piece of information - about a treatment or a diet change - that will put her on the path to health.  We can get a lot of suggestions, even if each person we talk to only gives a few.  We sometimes get a little frustrated by this.

It's helpful to keep the channels of communication open regarding health matters.  Chronic illnesses are not static.  Symptoms may wax and wane, or even go into "remission."   Your friend may not mention her health issues for a while.  It may be encouraging to her to let her know that you are still aware of her situation by asking from time to time how it's going.  Asking when you have the time to listen to the details and offer sympathy and support will let her know that you are genuinely plugged in.

Chances are your friend would like to reciprocate the blessing of being a good listening partner.  You may feel that you don't want to burden your friend with your struggles, but healthy relationships involve give and take.  Some times may work better than others, though, depending on what your friend is dealing with at the moment.  Also, she will likely want to celebrate your joys with you, even if they are blessings she has not experienced lately.

Well, that's about what I've got for communication.  Some time in the near future I will share some ideas about more hands on ways you can help a MWCI If you have any resources or relevant sites you would like to share please feel free to leave the links in the comments section.

1 comment:

  1. Thank you Rachel for these wise words. Passing on :) (((HUGS)))