The Best Advice No One Ever Gave Me

I celebrated a pretty big milestone this week. My fifteenth birthday. Technically it’s a “rebirth” day because fifteen years ago I received a stem cell transplant that saved my life and ultimately cured me of an aggressive form of non-Hodgkin’s lymphoma, a cancer of the lymphatic system.

If you’d asked me way back in 2006 if I thought I’d still “be here”, I’m not sure what I would have said. I knew the statistics (they weren’t good).

The likelihood of a relapse of the cancer was far greater than the likelihood of a cure. It was hard to live in that “space between”.

The space is pretty big chasm. It’s firmly situated between the measure of good health that many people take for granted and the despair of knowing that my body – and who I am – will never be the same. Ever.

Living with a chronic illness is not all that different.

Living in the space between

When we’re chronically ill, we’re in that space between. All of the time.

We may remember what it was like to feel healthy. But we acknowledge that it’s a memory of our past and not an assumption we can make about our future.

Even though we have good days – or days that are at least better than our worst days – it can feel like we’re constantly struggling to find and keep our footing on an unpredictable path without a clear destination.

I’ve been on this uncertain path for fifteen years.

I was diagnosed with cancer in 2004. My girls were 7 and 3. Since then, I’ve watched them transition from elementary school to high school and college.

During this time I have been fortunate enough to watch them grow up.

I’ve watched more girls’ basketball games, volleyball games and cheerleading competitions than I can count.

There was a 10-year stretch during which “dinner” consisted of concession stand food at least two nights out of every week. (If you live in northeast Ohio, let me know – I’d be happy to weigh in on which high school had the best popcorn.) I was able to chaperone field trips, shop for prom dresses and celebrate graduations. And now my girls are young women.

Damn, I’m glad to be here. I wouldn’t trade of any of it for anything.

I’ve tried to make the best of this space between during these past 15 years (and counting).

And for a while, I pretended that my topsy-turvy world had righted itself. Until 2018, when I was diagnosed with myositis, a rare autoimmune disease.

Three Pieces of Advice For Anyone Living With a Serious Illness

So it got me to thinking about what advice I’d give to anyone living with a serious illness. Oh, there’s no shortage of good advice I could send your way. (Some of which I’ve taken myself, others that I’ve ignored, but shouldn’t have).

I wanted to distill it down to what I believe are the three most important pieces of advice for living with serious illness.

This isn’t the typical advice you’re going to get from your doctor, your family or your friends: Eat right! Be honest with your doctor about how you feel! Stay up to date with your annual health screenings! Try not to worry!

None of these is bad advice. But would you be surprised if I told you that it’s not the most important advice?

Why? Because that’s the “housekeeping” stuff. It’s checking off the boxes on a to-do list and then patting yourself yourself on the back for a job well done.

And in some ways it’s superficial stuff. It’s sort of like picking up all of the clutter around the house and putting it in the closet.

Sure, the house looks better. Until you open the closet. Because you haven’t really dealt with the stuff – you’ve simply relocated it.

Which brings me to my first piece of advice for those living with a serious illness:

1. Nurture Your Relationship

“In sickness and in health…till death do us part.”

Chances are you’ve stood at an altar and recited these words in the presence of a hundred or more of your favorite people.  And you did so with every good intention – but without recognizing what it may look like when the “for better” is bulldozed by the “for worse”.

Living with a serious or chronic illness will change your relationship with your spouse or partner. And unless you both make an intentional effort to nurture it, it will change it for the worse.

When I was diagnosed with cancer in 2004 I felt as though I had failed my family.   I know that it’s irrational to feel guilt and shame for being sick.  I felt that way again in 2018 when I was diagnosed with myositis.

Being sick shifts the center of gravity in a relationship. 

I went from mother, career woman and wife to hospital patient – I needed the people closest to me to be my caregivers, and I hated that.

I questioned my worth because I saw myself as damaged, weak and unlovable. How did I feel? Like a burden.

I wasn’t getting the emotional support I desperately needed from my husband and I didn’t know how to ask for it – because I was afraid that doing so would make me look weaker.   

One of the biggest lessons I’ve learned is that having someone care for your health needs (making sure you get to appointments, sitting with you at the hospital, assuming many of the things that you routinely do with the kids or around the house) is NOT enough. 

Absent a solid emotional bond, your relationship will fail.

I learned this lesson the hard way.  No one prepared me for this.

Here’s my best advice for nurturing your relationship:

• Communicate. 
• Be completely open about how you feel and what you need.
• Lay your vulnerabilities on the proverbial table. No topic should be off limits for honest discussion.
• Recognize that your spouse or partner is trying to manage his or her own fears, stresses and needs, and talk about them.
• Set aside time on a regular basis to spend together – doing something that you both enjoy.

Acknowledge that your life together will be different. Be intentional about what that might look like and how you can bridge the gap between what it was and what it will be.

2. Don’t Bury Your Grief

I have a peculiar weed in one of my flower beds. It’s nestled amidst liriope, a thick and hearty ground cover that produces lovely lavender-hued flowers in the summer. 

Unfortunately, the weed is thick and hearty, too.  Left unattended it grows to a height of a couple of feet, firmly supported by its fibrous, thick stem. I’ve tried to pull it out. But damn, it’s resistant. 

And I don’t want to bother with digging it out because the roots run deep.  So I pull it until it breaks off. And it’s gone. Until it grows back in all of its ugly-duckling glory.

Grief is like that too.   We allow it to take root.  We deal with it at the surface. Maybe we put on a happy face.

Or distract ourselves with other things that temporarily shift our attention away from the elephant in the room – or the weed in the ground.

But it always makes its presence known.

And the root grows deeper.

For quite a while, I felt guilty about feeling grief.  I kept telling myself that I should be grateful to have survived cancer, knowing that my prognosis wasn’t good.  And I should also be grateful that I am functioning well with my autoimmune disease – after all, it could be a lot worse.

But that’s bullshit. Grief is a normal emotion. It is perfectly okay – and completely necessary – to grieve loss.   Ignoring gives it power.

My best advice is to name it.

• Write it down. Say it out loud. 
• Articulate what you’ve lost and how you feel about it.
• List the variety of emotions that you’re experiencing and what triggers them. After all, grief is connected to other emotions, too.
• Talk about what you’re feeling with someone who won’t judge you or try to tell you how to fix it.
• Recognize that it’s a process. 

We grieve what we’ve lost and over time the depth of grief changes. Can you learn to manage your grief? Yes.  Can you find a way to accept that it has its place in your life? Absolutely.  

3. Get Support

 “You’ve got this!  You can do it!”

Yes, you can get through this. You can do it.  But you cannot do it alone.  And you don’t have to.

• Strongly consider counseling – there are many online options for counseling, too.
• Join a support group.
• Find a mentor.  Is there someone who has experienced what you’re going through and can provide emotional support to you? Don’t underestimate the value of connecting with someone one-on-one. 

Everyone needs a support group – you can learn about the reasons why here.

It occurs to me that I’ve spent about 30% of my life in the shadow of the healthy person I used to be. There’s no going back to what was. Yet there have always been bright spots, lessons learned, and grace and gratitude.

When you focus your attention on what you can influence – fostering your relationships, enhancing your emotional well-being and seeking support from others, you are honoring yourself – body and soul.