Chronic Illness and Us:
PART I: Yes, You Can Do Something. Thanks for Asking
When you suffer from a chronic illness or develop an illness or disease, things suddenly become very complicated in one area of your life, but alternately, very simple in the others. While dealing with an illness becomes a complex labyrinth of doctors, second opinions, treatments, third opinions, considering maybe the first, initial opinion again, medications and other treatments, there are also a myriad of other things that are impacted: changes in lifestyle, relationships, family and marital upheavals with accompanying role changes that are sometimes disturbing or difficult to navigate; financial dings at best, and ruin at worst. Changes in abilities which affect work and income, social engagements, or sometimes cause a cessation of work and social engagements altogether. Some illnesses cause temporary or total, permanent disability, which affects, pretty much everything else in your whole world.
That’s the complicated part. The simple part is this: those of us with such conditions usually divide the world into two sections: people who are healthy, and people who are like us. Simple. We want to have as normal a life as possible, and so we want to maintain friendships and social connections, whether it’s on social media, in real life, over email, text or by phone. Some conditions make that very difficult. My condition is of the latter sort. As a consequence, many a-friend have gone by the wayside. That’s another thing that becomes simple: who are your real friends? Trust me, it becomes very clear, right away.
Often, if and when I do choose to share my health struggle, people often want to help. Even if they have their own health struggles — the sentiment is we want to help our friends and loved ones.
On the surface, that seems a generous prospect. Wouldn’t it be nice if, on the first day of your chemo, a friend brought a casserole, along with two more to freeze for nights you are too unwell to cook? But many people don’t know what to do or how to help when a friend, or even family member, is ill.
Since I am suffer from a chronic and oftentimes debilitating illness, I will make this very simple to all of you who wish to help but don’t know how. All you need do is ask your sick friend one, simple question: “What can I do to help?” Or better yet, “What do you need?” Or even, “What can I do for you and your family?”
Since I am a writer and words are my tools, allow me to point out the subtle, but important, difference with regards to language when offering assistance. I would discourage the seemingly helpful question, “Is there anything I can do to help?” What’s the difference? As a person who has heard all kinds of offers, here’s the thought process that occurs with the latter. “Is there anything I can do…” causes me to go over my illness in its entirety, in my mind, in a matter of a few moments. I will think of all the issues listed in the first paragraph of this article, and then, I will truthfully say, “No, there isn’t anything you can do. But thank you.” Because in reality, no one can help me with any of those things.
Many people have good intentions, but since I have been there, I can also acknowledge that, at times, I remember feeling a certain sense of relief when the sick friend “pooh-poohed” my offer to help. It is, after all, so overwhelming, isn’t it? And we all have our own lives to manage, don’t we? That was in the past — when I was young, busy, and enjoyed such a wonderful daily life, active and fortunate enough to enjoy, even take for granted, my good, physical health.
But there is nothing quite like experiencing a life-changing health condition to make you realize that when you offer help, you’d better mean it — -because I want people who offer help to mean it. I don’t want a verbal “gesture” so that they get to feel less guilty and I end up feeling even more alone. The thing is, you can ALWAYS do something. ALWAYS.
“What can I do?” is a more targeted, action-specific question that lends to explicit, micro-problems, daily needs or difficulties with which your friend could probably use some help:
“We are really low on food and I haven’t been well enough to go shopping. I could really use someone to go to the grocery store for me this week to pick up a few things.”
Oh, no problem. How about I do that Wednesday evening after work? Email me a list.
“I need help picking my kids up from school every day for a while.”
I can do that when I pick up my kids — is it all right if your kids wait a few minutes since my kids attend a different school? If they have cell phones, give them my number and they can call me, or I can call them with my ETA.
How about I call their school and talk to the counselor or office possible car-pool opportunities in your neighborhood? I’ll bet we can work out an arrangement.
“My kids could sure use a break outside of the house; I am home-bound for a while. An outing to the park or a change of scenery would really help out.”
I’ll have my nieces and nephews come over next Saturday and I’ll come get your kids. It’ll be a party!
I will be glad to come get them for an afternoon. Or, I can stay at your house with them, quietly keeping them occupied so you can rest.
I’ll see if my daughter can babysit, or have her check with friends looking for an after school or weekend part-time job. What day of the week works for you? Are there days you need it more than others? When’s a good time?
Have you checked care.com? I can do that for you and see what we can find.
“I have been too ill to clean my house, and my husband is working two jobs to support us and pay the medical bills that are mounting.”
Let me do some research. There may be an organization that has outreach programs to help people who are struggling with daily needs like this. I will get back to you. Worst case, I will round up a few of my friends or my family, and we’ll be there on Saturday, rags and mops in hand!
“I could sure use some company once in a while.”
Tell me when. I’m there. I can also bring some books, magazines, or even DVDs for you. Tell me what I can bring when I come visit.
Music to our ears, all. Or be even more specific:
Can I run any errands for you? Text me, call, or email me what you need.
How are you doing on food?
Is there anyone I can contact to help you? (Relief Society president for LDS folks, pastors or priests of congregations, community outreach programs.)
Holidays are especially difficult, with everyone’s belt stretched to the max, and their time filled to the brim with gatherings, parties, and shopping. But that’s the time sick folks really need a kindness or an act of compassion. Rally your family around someone who needs help and doesn’t have resources such as extended family, community or church affiliations. Everyone pitch in and bring a holiday meal dish. Pitch in and make sure the children of the family in need have gifts under the tree.
Lest you think this strategy and others are only for the financially comfortable, and you are not, therefore it doesn’t apply to you — think again. Not all acts of compassion and help take a financial investment. There are a million unsexy, unremarkable, tiny little ways you can help a person who is ill. There is really only ONE thing you need to do it: a desire to help in a real, tangible way.
Yes, donating to charities is a good thing and a great deed that we can all incorporate into our lives on a regular basis — a monthly donation to a worthy cause, even if it’s $10, it adds up. I donate to many causes, every month — but guess what? I consider that the least charitable thing I do. It takes zero effort, zero time, and is actually the laziest form of charity work I do. So don’t go thinking you should hand me a halo. No, the work I do, when I can, involves time, thought, creativity, and investments of all different kinds.
Should you donate to worthy causes? Yes, absolutely, yes! But there are people all around us, in your own family, neighborhoods, or communities who are not tapped into a world-wide organization. They are isolated, alone, frightened, struggling, and if they have children, remember that their illness affects every person in their family in unique and unexpected ways. Especially kids.
I recently found out a friend has prostate cancer. A real aggressive, dangerous kind. I care for this friend very much, and knowing I don’t have a lot to offer, I decided to reach out anyway. I told him I’d been struggling, too, but if I could help, I wanted to. He immediately took hold of the tiny bit of info and asked me to share my struggles with him. It’s rare that I will do it, but I did — I shared. It felt so good to let someone else in on what I’ve been dealing with. I didn’t feel so awfully alone.
I am a painter, and I want to give him a piece from my collection (not collecting dust, since I’ve not been able to procure gallery showings the last couple of years). How does that help? Well, for starters, he seemed very happy and excited at my offer to give him a painting. He has expressed an admiration for my art, and my paintings run in the several-hundred-dollar range, which the average person usually can’t drop all at once. Gifting him a painting is something he will appreciate and value. So a small thing from me — but every time he looks at it, it might remind him he has a friend who cares.
I also told him we should all get together. That really cheered him up. Spending some time together with me, my husband, he and his wife sounds pretty awesome to not only him, but to me as well. My friend and I, we could use some relaxing fun in our lives — and since we are both ill, the pace is set to our needs: relaxing, taking it easy, and probably a very early night for us both.
A simple email, a simple solution —”Let’s get together and just hang out.”
I have another friend who has breast cancer. She posted her harrowing journey on social media, but did it with minimal complaint, much dignity, and a positive attitude. I reached out to her, messaged her privately and said “You put on a brave face and I admire that. But if you need to let it all go, just let anything out, I’m here.” She emailed me, and boy, did she let it out. She lives in a different state, so there was little I could do in way of physically being there for her. She is a fan of my writing, so I sent her all my books, including ones awaiting publication and release, so she had plenty to read during her recovery.
I also took what she told me in the email and wrote a poem, dedicating it to her. How would that help, you might ask? She wrote me and told me that the poem brought tears to her eyes because she felt, for the first time, that someone understood her ordeal and she suddenly didn’t feel so alone. I posted the poem publicly on my author page and website in honor of National Breast Cancer Awareness Month, and it got a lot of play, a lot of shares — reaching countless women who struggle, as my friend had been struggling. So in helping her, she actually was able to help me reach out to countless other women seeking encouragement and commiseration as they battle this horrific disease.
If I had my health, I might be able to do different things for different people. Such as it is, I am only able to do what I can do minding my own limits, but using my abilities in the fullest possible sense, to help. I got creative. You can, too.
Which brings me to my second (or is it 25th?) point: if you are chronically ill, getting out of your own pain, misery, and isolation is, I believe, essential in managing, recovering or otherwise dealing with your own pain and limitations. Even if you are bedridden — get on your laptop and message a friend. Don’t tell them how you are doing — ask them how THEY are doing. Sometimes a listening ear is something a person desperately needs no matter if they are ill or well. We all get lonely, we all need encouragement. Message someone you know and tell them simply and straight-forwardly what you admire and like about them. Start with a simple, “I was thinking about you today and wanted to tell you…”
Message someone who inspires you, and tell them how they have impacted your life in good, positive ways. Remember to be gracious and show gratitude for your close family members — especially your kids. When your parent is ill, it’s frightening to kids, no matter if they are 4 or 14. Reassure them; help them feel grounded and safe. Tell them, in specific ways, how much you appreciate them:
“Thank you for taking over the dishes for me and your dad. You don’t know how much that one, small thing helps us.”
“Thank you for being understanding when I can’t drive you somewhere.”
“Thank you for helping me with your little brother/sister(s), even when I don’t ask. Your willingness to step up and help is such a huge help and relief to me.”
“Honey, I can’t imagine how hard my illness has been on you. Thank you for the many ways you pick up the slack, take care of me and our kids, and are always helping me see the positive, even when I feel down. Even though I’m sick, is there anything you need from me to make things easier or better for you?”
We, as a culture and society, don’t do well with illness, in our own lives, or in others’ lives. Often, people who have never had health problems sometimes carry with them a silent judgement, or air of superiority about them — blaming the sufferer for their physical condition. I have heard such things as “Well, if she’d just watch what she eats,” or “I have exercised my whole life and never been sick a day. That’s his problem — he isn’t very active.”
First, the reason you are fortunate enough to not be or have an illness is most likely good genes, and a whole lot of luck. Second, if there is a just God, you will get to see what it’s like one day, first-hand, whether in yourself personally, or your partner or child or other close family member. Life has an ironic sense of humor and a penchant for teaching you lessons, whether you want to learn them or not.
Yes, dealing with chronic illness is awkward at best, and downright overwhelming at worst. Often, a person’s illness is so big, so overwhelming, so…HUGE, we say to ourselves, “I can’t possibly make a difference.” But you’re wrong. You can. All it takes is a willingness to give a small bit of your time or a little energy. Sometimes it takes a little financial sacrifice. Sometimes, all it takes is opening your heart and allowing a person to tell you just how awful it all feels. And in that case? Sometimes, the best thing you can do is say a simple, “I love you. I’m here for you.” Love works wonders, when given sincerely and freely.
We all carry burdens. Some are heavier than others. Some are as heavy, but totally different. If you aren’t someone suffering from an illness, count yourself lucky — and realize one bad cell, one car accident, one mishap, one unlucky moment, and your life could change, forever. Don’t be afraid to do simple things, big things, one-time things, regular things, small things, impulsive things…whatever it is, no matter how big or small, do SOMETHING. And do it from the heart. We feel that more than anything else.
If you are someone suffering from an illness, whether it is chronic and permanent, or perhaps temporary, fatal, unknown, or other — help others in the ways you are able. I promise you, it will give you a new perspective on your condition, and it will do wonders for your own emotional well-being.
With the prevalence of it, I cannot omit the vast majority of people who suffer from mental illnesses. Let me be clear: mental illness is a physical disease. A person suffering from severe, clinical depression, or bipolar disorder, can no more “think” or “pretend” or “fake it ‘til you make it” away their illness any more than a diabetic can “think” his pancreas well or a cancer sufferer can “positive-think” his malignancy away. These are real, biological illnesses, and frankly, as I mention them, I think this subject warrants its own article. For now, know that these folks are suffering real, daily struggles of the kind you probably can’t imagine. And unlike a diabetic who has a tried-and-true method of controlling his or her condition, a person suffering from a mental illness has no sure-fire, specific way to treat it. Psychiatry is an inexact science, and they are barely scraping the surface of how our brains work. Mental illness is simply a chronic illness in the brain that presents behaviorally and emotionally. The societal stigmas need to end now.
And yet, even if your illness is depression or some other mental illness, what I say in this article still holds true. Medical research shows us that kindness is linked to physical health, mental and emotional health and well-being — even to longevity. Altruism causes good chemicals to flood the brain, which reduces stress. Lower stress improves the immune system and a host of other positive results on the biological, physiological levels. Getting out of yourself also puts your life in perspective — because I guarantee, there is someone out there who’s got something way worse than you. Realizing this helps you feel gratitude, which brings with it a sense of peace and joy, even amid pain and sickness. Oxytocin is a chemical released when we do good works. Oxytocin in the brain creates strong relationships and bonds. Endorphins are released when we express love and act in selfless ways. I could go on.
Bottom line? If you take all of that and put it aside, the simple truth of it is this: if you have a value system in place that holds helping others and doing good to man and womankind, you are not only acting in integrity with your beliefs — you are doing the right thing.
There is no downside.
Peace to you —
J.A Carter-Winward
Coming up next:
PART II: Helpful Help Given Helpfully That Is So Incredibly UNhelpful, It Actually UNhelps Way More Than Helps
