Hand in Hand: Communicating with Friends + Family with the Daily Uncertainty of an Autoimmune Condition

Friends having coffee together in the parkIn family and friendship, illness sometimes proves to be a delicate dance.

In some ways I am fortunate.  I am happily married to an amazing man.  We met and fell in love years after my diagnosis.  Lupus wasn’t something that just happened, a cosmic injustice of sorts that came crashing down on us in a time of vibrant health.  He went in, both eyes open, accepting me and what would most likely be a very uncertain future.  I believe there is one very significant reason for this.  My husband is more enlightened than most.  He lost his father after a 13 year battle with lupus SLE.  He witnessed his father’s painful decline firsthand, and knows very well what that kind of suffering feels like as a love one, and as a son.  His reaction to my chronic illness easily could have been the opposite for the very same reason.  He could have left, not wanting to potentially deal with that kind of heartbreak again.  Instead he chose love.

Despite how well we manage, things aren’t perfect.  My illness is still the greatest source of tension between us, but that is mostly on me.  I am known to be a stoic, dedicated A-Type.  I can easily feel like a burden, and I find it very hard to cope when being sick interferes with intimacy and other activities “normal” couples do regularly.  He doesn’t see it the same way.  I am never made to feel pressured or inadequate.  I am always treated with love, respect and compassion.  If we remember to communicate well, I can remember to let a lot of things go and take better care of myself, our partnership will remain a strong one.

But my relationships with friends and other family members can be very different.  I find myself focusing my energies into maintaining those relationships, more than anything else.  Relatives and lifelong friends remember me in my healthy days, and this has presented a unique challenge.  Lupus sure has complicated things in this regard.   Friends and loved ones have expectations, and I have expectations, and it isn’t always fair.  We’re human.  We’re not perfect.  It is so easy to forget that expectations sometimes need shifting, and that takes effort.  It seems the task of making things better never stops evolving. It really needs to be a two-way street.  There are steps we can take with friends and family, to strengthen bonds and create a measure of healing.  I believe these same steps can apply to intimate relationships with spouses and partners as well.

I believe it begins with communication.  On a news broadcast years ago, I heard six powerful words I still turn to when I am in need of direction: silence is the enemy of healing.  Of course being honest and direct with those we love is easier said than done; but I have learned there really isn’t any other way to be.  If I need space or quiet, someone to listen and a solid shoulder to cry on, or someone to do things for me because I am flaring badly, I have learned to voice it directly yet tactfully.  Of course this goes both ways.  If I have been asking too much of someone, they need space or I can help them when I am experiencing good days, I want to know.  Communication won’t be successful if we don’t listen.  In family and friendship, sometimes it just needs to be about the other person.  When it is my turn to be supportive, I see it as a welcome diversion from the day-to-day realities of illness.  It helps me feel engaged and useful.

Setting boundaries has also been critical in the health of my relationships.  My mother is particularly sensitive to my illness.  Just like a loving mother, she wants to take all of my pain and suffering and make it her own.  I love her for that, more than words can say, but it also means I need to set healthy boundaries with her; I need to shield her from things sometimes.  She doesn’t need to hear every detail of what is wrong, and going to doctor’s appointments with me can scare her.  I have identified the people in my circle who I can talk to more freely; who are more removed from my situation.  It isn’t about keeping my mother in the dark; it is about knowing and expanding my support system so I don’t burden the same people with what is a very stressful reality at times.

Part of setting boundaries is knowing when to avoid heavy conversations, tasks and issues.  When I am flaring badly and everything feels impossible, I have found it is best to keep interactions simple; because every conversation, every interaction, has the potential to be emotionally charged and blown out of proportion.  Yes, on some bad days I need support and someone to talk to.  On other days I need to let everyone know I need some space.  Open, direct communication is very much a necessary part of it.

Education is important, too.  As much as they love me, there will always be those who will feel a bit lost and won’t understand lupus and what it does to my life.  I will invite a friend to accompany me on a doctor’s appointment, if we both are comfortable and if she has expressed an interest in learning more about lupus.  I have found it especially helpful to lend books to friends and relatives, and I have continuously directed them to online resources, or forwarded links and articles to them when they have asked.  It feels good to know they are interested.  It tells me they care.

When I am trying to reinforce my relationships or get them back on track, I always want to make the effort to escape.  I invite friends and loved ones to join me for things that don’t revolve around me being sick, things that don’t tax my energy too much.  I will ask a friend to meet me for coffee close to home, or I will invite her over to watch a favorite movie if I am too tired to leave my house.  A short drive to a beautiful spot is always a nice thing do, to enjoy nature, feed the spirit and be inspired.  The only rule: talking about lupus isn’t allowed.

There are so many other things.  I have to remember that I am not the only one suffering, and others may find it difficult to cope with my illness and how I have changed.  Their fear and emotions toward it are in some ways a testament to their love for me.  At least that is how I like to see it.  But sometimes there is another side to it.  I have had periods in my life when, no matter what I have done, friends and relatives have grown resentful.  They may think I’m lazy or insincere, because I’m forgetful, I have to cancel plans, I am too tired to clean my house, or I am too sick to work, but in their mind I look “fine.”  I have grown tired of trying to explain.  I shouldn’t have to.  For those who are in my corner, I will always communicate my appreciation for them, my commitment to being as productive and helpful as I can, and my desire to take care of myself and make good choices.  Lupus does not define me, and my true supporters know it.

As for those who choose to be skeptical or unsupportive, I have to consider that I really shouldn’t have anything left for them.  Sometimes I need to let go.  While my husband has never made me feel guilty or bad for being sick, the same cannot be said for how I have been treated by a handful of relatives and friends.  It isn’t easy to make the break after we have invested our energy and love into something as valuable as a relationship with another person.  But when someone is no longer a good fit, moving on is the healthiest thing we can do.  It isn’t about blame, but simply doing what is best for me.

Author Elizabeth Gilbert wrote, “To be fully seen by somebody, then, and be loved anyhow – this is the human offering that can border on miraculous.”  Her words can apply to everyone, but for those of us who live with chronic illness, truer words have not been spoken.  Yes, none of us are perfect.  We have challenges and faults. We say things that don’t come out right.  Sometimes we act a little selfish.  We can be overly sensitive or short-tempered.  But despite all our imperfections, the love we share with caring family and devoted friends is always there.

And if there is only one thing I can rely on to make things better, it is this:

I go where the love is.

May you always do the same.

 

About the Author
Allyson Clayton launched her happy and healthy living blog Love Your Dash in February 2012, and in August 2012 independently published her first book: The Word Is Love – Lessons In Self-Acceptance, Relationships & Other Things That Really Matter.  She lives, laughs and loves in Northern California with her amazing husband and canine children Jack and Grace.  To learn more about Allyson and her work, visit LoveYourDash.com.

 

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Comments

  1. Hello Allyson! :) !
    Somehow I missed your first email/post here… will have to go back and read the first one now :) . I really enjoy reading your entries in your other blog, and this was is just as enjoyable!!! You have your own way of helping the reader see that things don’t have to feel as bad as they seem, and we can all learn to deal with our sickness/illnesses in our own way, as well as through reading about others going through similar issues :) . Thank you for that!!!! I have to commend you on a wonderful writing again!!!! As always I am amazed at your broad and in-depth knowledge you have to offer us! :)
    Take care my sister friend!!! And keep on living, loving, and laughing :) … BIG HUGS!!! :)
    -Rebecca

  2. Allyson,

    Thank you for sharing your experiences and wisdom. I have a nervous system related syndrome. It has seriously limited what of what I am capable. But I have a really hard time acknowledging my limitations so rarely tell people outside my home and if I do, I rarely allow them to see that I am not able to do what they ask. So my family and my home often pay the price. This is such a valued reminder that I need to communicate better with my husband and children as to their needs and be more honest with everyone (including myself) about what I can and cannot do. I am so glad that you have such a tremendous partner and wish you strength in your struggle with Lupus.

    All my best,
    Traci

    • Bless you, Traci. This is a journey that never really ends, even though I know the right things to do I have to remind myself consistently to communicate well. And I am just like you in that I sometimes struggle to acknowledge my limitations. I must remember that my blessings far outweigh my challenges. That, far more than anything else, helps me let go. I wish you the wisdom to do the same. I also wish you peace and strength in your struggle.

      In peace, love and light,

      Allyson

  3. Christel says:

    Thank you for summarizing what so many of us haven’t been able to adequately say!

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