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.

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6 responses to “How Can You Help A Mom With A Chronic Illness?

  1. Marvelous post, thought-provoking. Almost a ‘how-to’ manual to give to friends, new and old, some of whom alternate between baffled and angry or disappearing. But a must-read, as well, for the one with the illness, too, because I think we all tend to blame ourselves – to varying degrees – for our chronic inabilities, which are, after all, illness-caused.

    As always, thank you so much for your thoughtful writing and putting big issues into perspective.

  2. Wonderful post, but as a woman with no children, I read this post and realized that many of these could be helpful to any woman with a chronic illness. I can’t imagine being a mother with this debilitating disease. I work full time and then come home and head straight for the bed. When I leave work, my job is done. But mothers–my hat comes off and my heart goes out to you– your job never ends.

  3. Fantastic post. Absolutely ALL of it totally hit home with me. If I even had 1 friend who did any of this I’d be so thankful. Thanks for summing this all up. I’m going to post it on FB and see if any of my friends even bother to read it. šŸ˜‰

  4. Another great post! Thank you! You speak on behalf of all us mums with Lyme disease (any chronic disease).

    I should start by saying that I love my friends dearly and they are all wonderful… That said, there is at least one of my friends who tells me that I shouldn’t talk about my Lyme disease so much; that by talking about it, I am focussing on it too much, and that is making me more ill. I think she believes if I ignore it, just shrug it off so to speak, it will go away …Ugh!

    I should point out that I only got my Lyme diagnosis last year, after 22 years of rheumatoid arthritis and general ill-health. My diagnosis and subsequent treatment have been like a miracle to me and have been hard won through countless hours of reading, research and frankly, gumption on my part. Not to toot my own horn, but you all know what I mean. You don’t stumble on a treatment for Lyme, you fight for it.

    So anyway, my take on it is that the thing I focus on is the thing I get done! The focus brings results, not misery. My rheumatoid arthritis is now in remission after one year of treatment, so I feel vindicated spending my meagre energy on getting the right treatment. My friend has pretty much never been ill a day in her life, and so just has no field of reference for the desperation that comes from being in chronic pain with zero energy and having two kids to look after as well.

    She doesn’t understand that you would literally do anything and give anything to feel truly well, even for a week or a month. You would give anything to be a ‘normal’ mum to your children, with energy to take them out. To be able to socialise in public without feeling utterly spazzed and more than a little confused – trying in vain to put names to faces and not show how frazzled you feel.

    I guess some understanding of the breadth and depth of your problems would go a long way. I understand why she can’t empathise with me and be interested in hearing about Lyme, but it does bug me nonetheless.

  5. Thanks so much for this! A chronic condition by its very definition can obviously be overwhelming: ‘continuing for a long time and/or constantly recurring , etc.’
    I, too, plan to post this on my support group for nerve pain on FB. Hard to explain our conditions, and even harder to ask for help. The hardest thing for my friends to accept has been that what I deal with is indeed ‘chronic.’ Countless docs, diagnoses, therapy visits, medications and surgeries later, I often get asked “When exactly will you be better?” So maybe just having them know that no, we don’t have to talk about it all the time, but yes, even if we don’t, I’m still struggling with it. BTW, I know I’ll hear from some men that all these could apply to fathers as well. True enough.

  6. at this point acknowledgment would be nice.. no one wants to acknowledge.. then maybe a offer to help get the kids to an event if I cant.. just if I cant.. but it seems thats too much or they are oblivious.. I cant imagine beyond that!

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