Tag Archives: Lyme rage

How Can You Help A Mom With A Chronic Illness?

We all know how to do it when a friend has a baby, or when her mother dies. We support her, bring her meals, give her breaks from her children. We know what to do.

But when a friend has a chronic illness, we don’t apply those same rules. The whole idea seems to paralyze us.

I recently read a statistic that 50 million people live with an Auto-Immune illness, with 75% of those being women. I don’t know the stats on how many of those are mothers, but I’m willing to bet a whole lot.

So, how do we help each other? How can we, as a community, support those moms when they need us?

I don’t know what kind of help other people could use, but I’m interested in hearing from my readers what might help them as they work within their limitations. I’ve got a few suggestions.

1.) Don’t ignore the illness.

In order to put yourself in her shoes, you need to talk to her about her life. I can’t speak for every chronically ill mom, but I can tell you that my life is lonely. Overwhelming. Chaotic. Oh, and did I mention lonely? Most of my life happens online. Most of my interactions with people happen at doctor’s offices, physical therapy centers or through teaching. But I get worn out. When I get home and get the little guy to bed, I usually sit online or on the couch watching movies or more likely, episodes of sit-coms on dvd.

2.) Ask Questions.

This Chronic Illness isn’t catching. Really. Tragedy isn’t contagious. We don’t have bad luck. Talk to them about it. Ask them how they are. Ask them specific questions. “How the hell did your husband get it?” That is okay to ask. “I’ve heard Chronic Lyme isn’t real. What’s with the whole controversy?” Just ask. Please, please, please ask. “Why aren’t you well yet. . it is just “Lyme Disease,” right?”

3.) Include her in things.

She doesn’t have the energy to plan anything. So, invite her. Going to the beach with another family is a heck of a lot easier than trying to manage on her own. The same is true for any outing. Let’s face it, kids of chronically ill moms stay home a whole lot.

4.) Don’t assume that you have to help every day, or even on a frequent basis. Assume that little bits of help go a long way.

5.) Just because you haven’t been able to help out in the past doesn’t mean you can’t help now. Just do it. She isn’t mad. It is NEVER to late to notice her and to offer support. Never.

6.) Assume that the tasks of daily living and managing her own care are enormous for her. Come over and go through paperwork, fold laundry, help her fill out something in her mountain of paperwork. When your energy is limited, you don’t always have energy to open mail. Everything takes effort.

7.) Bring her a magazine. Buy her a month of netflix. Bring her a box of epsom salts for a nice bath. Amanda, a mom from my little guy’s pre-school brought me an Entertainment magazine two months ago, in the middle of the big bartonella treatment. I’ve read it dozens of times. And, I’ve enjoyed it.

8.) Loan her movies. I’m working on Arrested Development and Gilmore Girls, two series that Sarah M. has gotten me hooked on. They keep me company. Just make sure you come over and pick them up. Returning things and remembering where things came from is really stressful.

9.) Host something for her. This could be a clothing swap. A school supply drive. A family benefit event. A meal train. A playdate schedule. Everything takes 10 times more for her to do than it does for you, and she is always operating from an energy deficit.

10.) Offer to come over once a month, season, year to babysit so she can go out with her husband. Marriages take a huge hit when you have a chronic illness. In fact, few survive.

11.) Accept that her illness is real, that she lends no drama or exaggeration to her situation. Commit to your friendship rather than running away.

12.) Give her the gift of your time and commit to it weekly/monthly/yearly. Know your own boundaries. That kind of commitment helps you hold your boundaries and helps her have something to rely on.

13.) Send her a gift card, put money on her account at the grocery, send her cash in the mail. When you have a chronic illness, you can’t work with the same intensity that other people can. Budgets are beyond tight.

14.) Agree to call her friends. One by one, call them for a commitment. Pizza making night, once a season? Drop off your CSA veggies once a year, when you are vacation? Run to the co-op for her once a week? It isn’t how much you do, but the idea that she can count on something, to take some of the pressure off.

15.) Help her make new friends. Having a chronic illness doesn’t make you the homecoming queen of the neighborhood. When she is out in the community and people ask her how she is, she says, “fine”. No long stories about the MRSA infection or the mycoplasma. If you ask more directly, she will tell you, but she doesn’t like to focus on her illness, regardless of how hard it is to push it out of the sight lines.

Regardless of what you do, do SOMETHING. Her illness is likely invisible, but she shouldn’t have to be. I write this post from my perspective of a chronically ill mom, who is parenting chronically ill children, and who is married to a man who is in chronic pain as well. These suggestions apply to child-free women and men, and to chronically ill kids, fathers or partners of chronically ill spouses. Again, regardless of what you do, do SOMETHING.

Next post. . your ideas. If you have a chronic health issue, and are trying to parent young kids through it all, comment and let me know what would help YOU. And, if you are a friend of someone who is chronically ill, what do YOU do to help? Or, are you one of the friends who have run away? Help US all understand how our illness pushes you away. It is a complex issue, I know. Feel free to comment anonymously, and if you don’t want me to approve the post, let me know and I will just take the information into my next post.


I just want to be noticed. . .

I have an ugly bruise from yet another test.  It is on the crook of my elbow and in yoga today, I wanted it to be seen.  As a woman with an illness, I am the baby of a large family through and through.  I want desperately for someone to notice me.  To hold me and tell me that I will be okay.

But I am a grown woman.  My parents are dead.  I have children to raise, a husband to manage, bills to pay.  And I know that everything might not be okay.  And still, I just want someone to notice me.

Lyme rage certainly gets me noticed.   I now know what my greatest healing stretch will be:  getting enough support so I can keep my children safe from my rage.  I love them and I know they are struggling too.  But the anxiety and rage get the best of me.  I remind myself of my dad when he was on the edge of a heart attack.  The diseased body can do terrifically terrible things to our psyche.