Thursday, September 17, 2009

The people who are there for you

This is written in honor of National Invisible Chronic Illness Awareness Week and has been cross-posted to gratitude365.

One of the more heartbreaking aspects of being sick is the change--or the loss of--relationships. I went through this the first time when I became a mom. My relationships with friends without kids changed. I didn’t have as much time to invest in them and they couldn’t always relate to my life. Getting together required advance notice, a negotiation with my husband, or hiring a sitter, so it just started happening less and less.

Then about a year and half ago, after my second son was born, all wheels fell off. I went on a roller coaster of infections, symptoms, and doctors and was finally diagnosed with Chronic Lyme Disease. I started to go through the friendship change again. Not only was I living with a chronic illness, but was also staying home caring for a baby and a preschooler. Getting together with friends was even more complicated. Not just because of logistics, but mostly because I was--and still am--sick and tired. And if I get a break, I want to crawl in bed, go get a massage, or swim a few laps.

So, I did not invest in some relationships like I would have liked over the past year. I’ve just been too overwhelmed with my own life. But frankly, I’m surprised and disappointed with people who I thought would “be there” but aren’t. They might have been at first, but I think over time, there’s an impression--or expectation, maybe--that I should be better by now. Or maybe it’s because I don’t look sick they don’t realize how sick I really am. Or maybe they’re buried in their own overwhelming life and I don’t know it because, like me, they’re pulling off a Ginger Rogers act.

But sometimes I find connection where I least expect it. For example, an old colleague on Facebook, whom I haven’t seen in 10 years, sent me a very kind note after reading about my struggle with Lyme. He shared that his wife has MS. He wrote, “Her symptoms are invisible to the rest of us who, at times, are somewhat insensitive to her private suffering.” I teared up when I read that. He is one of the few who get it.

Lyme has given me my new BFF, Alix. We were acquaintances and Facebook friends, when I posted something about looking for a far infrared sauna. She eerily commented, “Do we have the same thing?” Alix has since then become a huge blessing in my life. She’s the only person in the world I don’t have to explain anything to. We go to each other’s doctor visits and discuss medications, supplements, diet, and body functions ad nauseam. And in the midst of her own suffering, she finds a way to comfort and humor me in a way no one else can.

Of course there’s my four sisters and a couple girlfriends that I’ve known forever who even though they don’t live here, will say they wish they did so they could bring over a meal, take the boys, or go out for a much needed drink (even if it is only green tea). And those relationships haven’t changed, if anything, they grow stronger by the day.

As hard as this has been on my husband, and we’ve had some rough moments (to put it mildly), I’m constantly amazed by his loyalty and capacity to care for me. I’m reminded of our wedding vows: “Loving what I know of you and trusting what I don’t know, I choose to spend my life with you.” Who would have thought we’d be faced with “in sickness” only six years into our life-long commitment. But, as much as this sucks, without Lyme, I wouldn’t have realized how much that gamble has paid off. I can’t imagine facing the future with anyone else.

Sometimes I get really down about not being a very fun mom. I’m fatigued. I’m in constant pain. I’m irritable. I have panic attacks. I let the sitter take them to the park. I let Dad do the roughhousing. And the soccer, baseball, golf, hockey, croquet, or dirt digging in the front yard falls to the neighbor girl to manage (what a blessing she is). I’ve had many teary moments wishing I could go running and giggling with abandon after these active boys. But on the flip side of all this, I think--and hope--that perhaps I’m raising empathetic boys. I’ll never forget the first time Ry asked me, “You fragile, mommy?” And then just this week, while his dad was out of town on business, he says to me, “I’m going to take good care of you Mommy, but I can’t cook.”

And then there’s my own father. We’ve had our differences over the years. And there’s pain there. But my having Lyme disease for whatever reason, has made him come to terms with what he sees as his shortcomings as a father. He has apologized to me, which means more than I can ever write into words. I feel like he’s “seeing me” more than he ever has, and he, along with my mom, is becoming a reliable source of empathy.

My former colleague put it this way referring to his wife's MS: “This new, permanent member of our lives has taught us many things about living. I wish the positive lessons learned could have come through different means, but they have come and we are grateful.” And to that I say: ditto. And I can only add that may I never take these relationships for granted again. While I am not grateful for being chronically ill, I am grateful for the deepening of these bonds, the love I’ve experienced, and new eyes with which to see it all.


kim said...

HI Kim! Saw info about your blog on 'Go Read It Today'. What a great find for me as I just found out, a few weeks back, that I have Lyme. I share your feelings and thoughts and miss the rough housing with my 4 year old. I hate when I'm so exhausted but I don't look tired to anyone and feel so guilty over desiring a nap. In any case, again, so happy to have found you.

Kim said...

Oh, Kim, so sorry to hear about your diagnosis. Welcome to the Ginger Rogers club:( I need my daily nap, too. I missed mine yesterday working on this post!

Thanks for stopping by. Hey...what is this "Go Read it Today?" I went looking for it, but couldn't find it.


Alix said...

Hi Kim #2! Thanks for stopping by our blog. So sorry to hear about your diagnosis and that you are now in "the club." I hope you get some relief soon. Come back and see us again.

Alix said...


From one spirochick to another, that was one beautifully written and evocative post. This is a big life shift and you've captured it so perfectly -- there is a changing of the guard that we don't anticipate. The most long-term friendships, the ones that started before we got sick, the people who knew us without illness, those are the ones who stick around. They are the only ones who can see the contrast, the reduction in personality and participation.

Thank you for describing the sympathy topic so eloquently. I don't know why we need sympathy, but if no one cares that we are suffering it makes fighting this almost unbearable. I've personally been jealous of the attention and sympathy cancer patients get when they go through chemo. I'm not jealous of the diagnosis, no way, but I feel like I'm on flipping chemo every day for a decade and there is so little sympathy. Should I shave my hair and say it fell out due to treatment? Lymies get no rallying around. No meal delivery. I'm sure I'm not the only one to suffer a deficit of sympathy for this disease.

Meeting you and being able to go through this with you, Kim, has made this disease so much more bearable and hopeful. It's amazing that new friends come into our lives right when we need them. You are my new BFF, too. I'm with you all the way. When is your next doc appt (ha ha ha.... spa vacation....)?

Monkey Girl said...

Beautifully written Kim.

I too, have found most of my relationships have changed over the years dealing with a chronic illness.

My true friends were the ones who stuck with me even before I got a diagnosis. :)

A lot of the people in our Lyme Group have lost friends and family members because of Lyme. It's hard to keep friends/family when they tell you you're just being a martyr. Or better yet, "Stop being a baby, and get out of bed!"


Nap time.

Kim said...

Monkey Girl--

It's really cathartic to put this out there and to find out I'm not alone in this. I mean, it's a huge relief to know that I shouldn't take it so personally--the friendship thing is a reality of chronic illness, I guess. BTW, what to you mean by Lyme Group? Are you talking about an online Yahoo group or is this something you go to and meet with live Lymies?

Kim said...


I honestly don't know how I'd be faring without you. You're such a bright light through this.

I don't know if it's sympathy I need so much. My former endocrinologist said "you poor woman," to me over the phone one day and it really didn't feel that good. I think I would have liked it better if he said, "that really sucks."

It's really empathy I want. Someone trying to understand how I might be feeling. But I get how that's hard if you haven't been there. That's why you're such a blessing. You know what I'm feeling.

Monkey Girl said...

I belong (now run) a Lyme Support Group here on our little island. First Saturday of every month at my house, for people suffering from Lyme and co-infections to people who care for Lyme sufferers.

It really helps talking with other Lyme patients. Our stories all have the same thread.

It always helps to know you're not alone.

june said...

Kimmy, you're such a compelling writer! Thanks for taking the time to craft these posts and to be genuine...doing so takes precious time and energy and I think you are wise to use some of that precious time and energy in this endeavor. I KNOW it benefits others...I pray it benefits your heart and soul and mind as well!

Alix, I'm so sorry that you don't feel much sympathy/empathy...that's never a good feeling. Perhaps because I grew up with a chronically ill mom, I have HEAPS of not only sympathy/empathy but also respect for Lymies and others who deal with all that you do. I also went to college in western NY where Lyme disease was rampant and I had many friends who had family members who had Lyme, so I learned a lot about it then. (Well, I learned a lot about what it was like to have a family member who had Lyme.) Anyway, know that there are non-Lymies out there, like me, who 'get it' as much as is possible and empathize greatly!!! I'm so glad that Kim has taken the time (again) and gone to the effort (again) to fill me in along the way so that I CAN empathize more. I'm sure it's not fun having to spell everything out for me, but it's drawn us closer as friends and as the best of friendships go, I hope I speak for us both, Kimmy, when I say that I love our now rich history and joyfully anticipate our equally rich future. While we don't share Lyme, what we do have in common is far greater than what we don't have in common.