Guest Post: February, Family, and Friends

Today’s post is a wonderful Guest Post (and must-read!) by Health Activist Julia Olenik blogger at the awesome blog Reasonably Well. In her guest post she shares her experience with that third relationship conflict mentioned in our theme: your condition vs. your family (and friends). Julia offers real, honest advice and I know you’re going to enjoy reading this as much as I did. –Amanda

February, Family, and Friends

The month of February brings with it several interesting events; one being Groundhog day, when it’s so gratifying to anticipate the end of winter. Another is Super Bowl Sunday and the best excuse ever to gather in large boisterous crowds in front of huge televisions while consuming large quantities of really-bad-for-you snacks.

But my favorite day by far in February is Valentine’s Day. Why? Well, gifts of chocolate in heart shaped boxes from a wonderful hubby for many years are very, very good things. But aside from chowing down on a serious amount of high quality candy, Valentine’s day also is a great time to for me to take time to appreciate not only my marriage, but all the relationships with others around me.

When I think about my relationships, mostly I think about how fortunate I am to have these special folks around me, especially since autoimmune disease entered my life. My ties with my family and friends were certainly tested during the early days of my diagnosis. I am incredibly thankful that these vital bonds survived, and eventually flourished. But it wasn’t an easy process.

Seven years ago, I was diagnosed with Sjogren’s syndrome, and my life changed in ways that I would never have imagined. I wish that I could say that I accepted these changes with grace, but I didn’t. No, I became crabby and very self-centered. Not that I didn’t deserve to be a bit cranky: Sjogren’s brought with it bone-crunching fatigue, joint pain, the classic dry eyes and dry mouth. It also took away my job and several of my hobbies.

I was not a happy camper.

As I struggled to adjust to the enormous changes that my body was making, I became aware that my social circle was changing, too. Several friends that I had considered close began to just……fade away. My family and closest friends often looked at me with puzzlement and concern. They didn’t know what to make of me, and I didn’t know what to make of me, either. It was a difficult time, and I knew that if my ties with my loved ones were to survive, I needed to look to the wisdom and experiences of others who had successfully made this journey before me.

I found a helpful perspective from another woman dealing with chronic illness in the book A Delicate Balance: Living Successfully With Chronic Illness, (Perseus Publishing, 2000, pg. 191) In it, author Susan Milstrey Wells dove headlong into these same issues. She discussed the many ways that chronic illness may impact all of our relationships – those as a spouse, a child, a sibling, a parent, a co-worker, and as a friend. She summed up her experiences by saying:

Continue reading after the jump…

She summed up her experiences by saying:

“Chronic illness throws a monkey wrench into our relationships. We may seem as foreign to the people who love us as if we had begun speaking a different language. Our family and friends still want us to the mom who works, the dad who plays baseball in the backyard, and the friend who meets them for lunch. In turn, we want to be treated as the same loving spouse, parent, and friend we always have been. A large part of the responsibility for making those relationships work falls to us. We have to educate our family and friends about our disease, allow them to express their emotions openly, and clearly state our limits and our needs. Also, we have to expect these changes to be unsettling.

Ultimately, as we strike a delicate balance between our own needs and the demands of our most important relationships, we grow in self-awareness, creativity, and acceptance. We can’t be sick successfully without learning to love ourselves, and when we accept our own limitations, we’re much more likely to let those around us be less than perfect too.”

After I read these paragraphs, I had to stop and think about what she was saying. Did I really have a responsibility to maintain and nurture these relationships? That some of my friends may have disappeared partly because I hadn’t been communicating effectively with them? And that I was expecting perfection in their behavior while excusing my own imperfections?

Well, now. Hm.

Initially, I was indignant. I was the sickie, after all. I was working really hard to reconcile the losses and changes to my lifestyle and body image within myself. Was she saying that I also had to work hard to maintain my relationships with others, too?

Of course she was. And she was right. Those relationships that bring such support, joy and energy to my life are the most valuable assets that I could possible have, I reasoned. Anything of that caliber of importance deserved to be nurtured and appreciated.

It was a revelation for me to consider Ms. Wells’ assertion that in order to preserve my relationships with those that matter to me most, I first needed to take time to come to a truce with my disease: to allow myself to be what she termed as successfully sick. To find some measure of acceptance of the reality of my illness, and in doing so, to learn to love the person that I had become.

Good grief in a bucket! In order to preserve my ties with family and friends I needed to be sick successfully? I didn’t want to be sick, successfully or otherwise. I wanted to be well! I wanted autoimmune disease to be something that could be cured, not accepted as part of my daily life. Of course I also wanted world peace, to be able to fit into a size 6 jeans, and to raise my IQ by at least 20%.

A tall order, indeed. It was – and still is. I’ve given up on the jean size and my IQ, but have realized that for me to be happy with others, and for others to be happy with me, I first need to be happy with myself.

In accepting this task as one with merit, and in resolving to actively work towards that goal, my outlook has changed. Even now, all these years later, I still struggle to accept myself for the person that I am. But I am trying, and in making that effort, I can honestly say that much of my anger and frustration at my disease has diminished. As these negative emotions lessened and I found some peace, it became far easier for me to focus less on my problems and spend more energy enjoying time with those special people that surround me.

With this new frame of mind, it became a bit easier to be honest with others when asked, How are you? When I took those small opportunities to educate and advocate for myself and others with autoimmune disease, it not only expanded my friends and family’s knowledge, but also sent a message to them that I respected their perceptions and their ability to understand. As they learned more about my disease, they became more comfortable about discussing it openly with me, which in turn made me more comfortable talking about it with them.

I realized that it was equally important for me to ask others the same question – How are you?, and to be ready to sincerely listen to their answers. It took less effort to look beyond myself and my needs to appreciate that others around me were dealing with their own set of challenges. As I became less obsessed with living with chronic illness, I also became more active in finding out how I could assist my friends in their lives as well. I needed to re-learn the lesson that the road to successful relationships is indeed a two way street. That each one of us has our own individual invisible something – be it an illness, or anxiety, or

I knew that we had all survived the arrival of Sjogren’s syndrome when we became able to laugh about it. Like the times that my friends teasingly accuse me of playing the S card when I opt out of physical activities….or when I in turn try to avoid scrubbing the toilet by dramatically sighing and placing my forearm over my brow as I exclaim, But I have SJOGREN’S SYNDROME! as my hubby John rolls his eyes and hands me the toilet bowl brush anyway. Or when my friend and I decide that the ultimate cure for autoimmune disease is a really good frozen mango margarita – and then go get one or two.

After seven years, things have settled down considerably around here and it’s a relief to be past the flurry of change. We’ve all gotten to know each other much better through it all, and life goes on. Funny how this resolution needed to begin with my acceptance of my new successfully sick self.

This Valentine’s day, I’m going to make sure that I let my family and friends know how much I appreciate them. As a result of our shared experiences, I know that I can count on this group of wonderful people to get me through the day……..and they know that they can count on me to help them through theirs. I think that’s what matters most of all, don’t you?

Now let’s all go get a great big heart – shaped box of really good chocolates.

5 thoughts on “Guest Post: February, Family, and Friends

  1. Julia, as usual, you sum up what many of us with chronic illness – especially Sjogren’s – think and live every day. I enjoy your generous serving of seriousness topped with a dash of sarcasm and a sprinkle or two of laughter. As Health Activists sometimes we have our lives together ourselves, sometimes not. It’s great to read reminders like this though because many of the members of our communities are there for just this kind of support. Remembering something vital like “communication goes both ways” can be key to the well being of our members. Thank you for a great post!

    Ellen S

  2. How wonderfully applicable your message is to so many whether they be “sick” or are caring for a person who is sick. In a nutshell, the word is acceptance. My husband is sick. He has Alzheimer’s and we are in our 8th year. It is the accepting that gets us over the hurdle, and getting over the hurdles brings us back to where we want to be: as close to normal as possible.

  3. Julia,
    This is just a beautiful post describing the challenges we face living with chronic illness and dealing with relationships. We must not forget that our relationships need nurturing, although it is so very easy to do just that.
    Thank you for some very important reminders and messages that transcend conditions, but can apply to everyone.
    In gratitude,
    Amy K

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