Hi Wonderful Readers, I wanted to tell you that I’m writing a feature on women, friendship and illness for MORE Magazine and ask for your input.
The piece will focus on what friends need from their friends when they are facing a chronic condition — whether it’s lupus, fibro, RA, Lyme, MS, you name it — or a more acute situation, such as cancer. My hope is to give women who are ill a voice to talk openly about what serves them best when they are sick, and how friends can say and do the most supportive things. And to also help all of us who have a friend who is ill to be the best friend we can.
We all know this is tricky territory. It’s hard, when someone is ill, to know what to do and say without saying or doing the wrong thing. Who among us who has faced chronic illness hasn’t seen both sides — the friend who was there, making our kids grilled cheese sandwiches without our asking them to, or the one who came and got our kids dressed and drove them to school every day without ever once talking about her own busy schedule? Or who simply sat by our bed and asked, “Hey, what kind of day is it for you today?” And we have seen the opposite, too. The well-meaning friends who said insensitive things. Maybe we’ve learned a lot about who our friends really are by how they behaved when we were really ill.
It’s not easy to know what to say and do when someone we love is sick or seriously ill, and when we are sick it’s hard to know how to ask for what we need. As s a society we’re just not all that comfy having conversations about illness openly.
We also know, and studies show, that having warm, caring friendships is good for our immune systems. It helps us both physically and emotionally to have strong ties.
This piece will explore all this and more.
So, in order to make the piece as rich and honest as it can be, I’m looking to interview some of my amazing female readers who fit MORE’s age demographic (between the ages of 40 and 60) who are also facing chronic or even quite serious chronic conditions. If you are interested, and are between 40 and 60, reply below just to let me know a bit about what you’re facing physically (a sentence or two will do), and whether this topic is something that’s been on your mind, and why. I’ll reach out to you to discuss more.
Thanks readers! Oh, and you can read my previous two part feature on how illness impacts the lives of mid-life women here: “Ill in a Day’s Work” and “How a Marriage Survives When One Partner Gets Sick.”
If you can use my story I would love to participate. I have been suffering from fibromyalgia for 17 years. Pain is my daily friend. So if you need some “stories” I have a few to supply.
Thanks Becky, I’ll reach out to you by email!
Hi Donna. This is such a wonderful idea!
It is so needed!
I don’t have much to offer here. When I got sick there was only one person who helped me and became my friend; my doctor.
Women who do have a friend who sticks with them are so blessed.
I’ll be excited to read it when complete.
You continue to be such a blessing.
Thanks Stacy, for your kind words, so glad that your friend (and doctor!) was there for you and continues to be! xoxox
Hi Donna. I am 58 years old and 3 years into a Dx of Parkinson’s. I am not sick yet but the drumbeat is consistent as I begin to lose executive function and perhaps more. I still work full time and am the very proud mother of two sixteen month old basset hound mixes. My girlfriends help me decide to keep working, to stop working, to exercise more and to live life fully while I am able whatever that means, and at the same time support myself financially for the long haul. What I would love to do is retire and take my husband and dogs and kitty cat with me to Louisiana and take care of my mother who is 88, crooked, and who also has Parkinson’s. What I am doing is still living life to the max despite the fatigue and the mental blanks. I keep thinking that if Janet Reno ran for governor after 7 years with PD I can keep working in a not too stressful job. I could not stay sane without the laughter and support of my friends and family with whom I am open and honest about these issues. When I misplaced something at work I promised St Anthony $50 and paid up happily when my coworker found the item rather than have to fill out a “Significant Incident Report.” This is all very funny and terrifying and I am always looking for others to clutch onto in solidarity.
Thanks Betsy, I’d love to talk to you. I’ll reach out to you via email!
Hi Donna, I am 49 years old and am dealing with the incurable disease of pulmonary arterial hypertension . I am oxygen 24/7. I also have rhemuatold arthritis and scleroderma . It has been interesting to see the different reactions of my friends and family members. I am happy to share any of my experiences with you. Mary
Mary, I’d love to speak with you. I’ll reach out by email to you and thanks for reaching out.
Hi Donna-Thank you for bringing awareness to this sensitive topic. Prior to getting diagnosed wth Scleroderma, Lyme and Asthma I would participate in the More 1/2 Marathon in NYC. It was one of the first things I had to ‘let go of’ due to illness. Unfortunately those friendships that revolved around physical activity were lost as well.
I believe that social connections are necessry for healing and I am so grateful that you are writing about it and would love to be a part of it.
Angela, you’re so brave, as are all the women posting on this page. It humbles me to hear what women deal with in their search to surmount living with chronic illness. And friendship can help lift us in meaningful ways, so I’m excited to do a piece about how to be a friend when a friend is ill. So we can all learn what helps the most, and what doesn’t. I’ll reach out by email to you and thanks for reaching out to me.
I was recently “directed” to your book, and wow! it could be my story! i am 52 years old, married with two teenagers. I have suffered from and managed a number of mysterious symptoms and diagnoses through the years, which were exacerbated by foot surgery about 10 yeas ago. Now I deal with debilitating chronic pain and exhaustion. I use a number of tools like massage therapy, acupuncture, yoga, meditation and prayer to get me through my days, but I would still like to feel better. Hoping your book will help me find more answers!
Julie, I’m so glad you were “directed” to my book, and I’m grateful to the person who led you to pick up The Last Best Cure. Please let me know what you think and if its helpful, I so hope that it is. How great that you are already doing so much to help you get through your days — that wows me. Keep me posted as you read the book, would love to hear from you.
I am 45 with RA and a new dx of fibro. I am certain it is from years if high stress, high cortisol life, which included job loss of my spouse, his deployment, and a house fore, just to name a few. I a yiga teacher and know that is part of my wellness, reinforced by my slacking in my yiga/meditation practice only to find a flare resulting. I would love to talk to you more and loved hearing you at the Annapolis Book Festival.
Best,
Lisa
Thanks, Lisa, for coming to my talk today! It was nice to meet you. You have a lot on your plate — it amazes me how much women with autoimmune disease face. You are pretty amazing. I’ll reach out to you via email!
Donna, I am a 55 year old mother of 6, with 3 grandchildren. My three youngest boys are now in high school. When I was diagnosed with an auto-immune condition (unexplained) 13 years ago I had three children in diapers. I, like you had lost my joy, and did not know how to keep up with my life. I struggled with fatique terribly. In the beginning, I would sleep 14-16 hours a day. Yoga and water aerobic classes helped tremendously with increasing my stamina, but it was my instructors at the recreation center and my friends that helped me through the rough times. Recently I have been told that I may have MS. Your book, “The Last Best Cure”, has been at my bedside since it came out, and has given me such insight, and HOPE to how I can tackle this new diagnosis. I thank you so much for all the actual scientific data, and for you sharing your story!!
Cindy, thanks for reaching out. I’d love to talk and hear more about how friends helped you through. I’ll touch base via email shortly.
Hi Donna,
Have had mixed connective tissue disease and Myasthenia Graves for about 5+ years. We have spoken in the past and I would be happy to give some impressions.
Hi Nancy! Glad you are willing to be interviewed again! I’ll reach out by email… good to hear from you.
I found out about your book “The Last Best Cure” via a recommendation in Mindful Magazine, which then led me to this request for interviewees. I’m 54 and was afflicted with Polio at age two (so I’ve lived with fatigue/braces/crutches/walkers/etc for about 50 years). Then in 1997 I was diagnosed with Post-Polio Syndrome, which is a degenerative disease that attacks the nervous system and only affects Polio victims. In 1998 I was diagnosed with breast cancer, and last year I was diagnosed with endometrial cancer. I have raised two amazing kids (ages 24 & 21) with my husband, who is also my best friend; and I have lived through a lot of what you, too, have lived through. In the past couple months I finally realized that stress is undoubtedly at the root of my illnesses, and that led me to begin the ‘mind-body therapy’ journey, myself. I am so very grateful to you for sharing your findings about this relatively new area of healing. If you are still seeking interviewees for your article, I’d be more than happy to share some of my experiences.
Cindy, thanks so much for your email, I am wrapping up the article but will reach out to you by email as well and let you know where I am — so appreciate your reaching out!
Hi, Donna,
My name is Jeanie Croope and I recently (very — within the past couple of weeks) learned that after years of a chronic lung disease called bronchiectasis for which I’ve been treated at least six years, I now have an additional lung issue called mycobacterium avium complex or MAC. There is a treatment for MAC and I will begin it soon; it sounds like quite the harrowing experience, or as my infectious disease doc said, “The cure may be worse than the disease.” The bronchiectasis is not curable (the MAC cure is dicey) and is chronic. I’ve struggled with this one for awhile and while I’m not excited about a treatment that doesn’t sound good (and I haven’t even heard the details), I am in it to win it. I have written about living with chronic disease on The Marmelade Gypsy (labels: chronic illness) and I will again as I go on this journey. I have found extraordinary support in family (I’d better!) and friends, along with a tremendous support system in those who read my blog. Many of those conversations have long passed the comment box. That combo, my health professionals and my newest purr therapist, Lizzie Cosette (alas, the Gypsy went to the Heavyside Layer a year ago) help me through every day. If I fit the profile you seek, I’d be glad to talk with you. In a way, it’s a responsibility.
And I’m delighted that a friend sent me a link to your website and book. I’ve already ordered it this afternoon.
Hi Jeanie, wow, you have been through a lot — like all the women responding here I’m humbled by your journey. Bows to you (and all the women here). I’ll reach out to you by email!
Hi Donna,
I just finished reading your book and loved it. I have two children 2 and 4 and have MS as well as recently been diagnosed in a 2 week time frame with Graves disease, optic neuritis and tachacardia. I would be glad to help if you would like. Thanks
Hi Kira, I’m so sorry to hear of your struggle. My children were 2 and 6 when I faced paralysis with Guillain Barre for the first time — I know how difficult it can be and how managing autoimmune and motherhood while raising young children is so very difficult. I’m glad you loved The Last Best Cure! I would have loved to speak with you for the article, however I’ve finished doing interviews for the piece and will turn it in shortly! All the best to you Kira, with warm wishes. Best, Donna.
I became sick/disabled at the age of 35. I got fired from my job and had to move 3000 miles away from where I was living my life to live with my mother – who is now my primary caregiver. I have a progressive, degenerative neuromuscular disease, Primary Lateral Sclerosis (upper motor neuron disease, closely related to ALS/Lou Gehrig’s disease). I was shocked when people I had been friends with ended our friendships. One woman actually said to me that my being disabled and living with my mom would make me too needy and she couldn’t deal with what i needed from her, that she couldn’t be “that friend” (whatever that means). 20 years of supportive friendship and when I needed support I got dropped. I know it’s all about her and what a cowardly piece of crap she is – but that doesn’t make it hurt any less.
Honestly I am not 40, I am 36 soon to be 37. I am a mother of three young children. One of which has a mild autism, age 7 boy; high energy 6 year old boy, and a stubborn 3 year old girl who tries to out shine the older brothers. I was just recently diagnosed with secondary adrenal insufficiency. I have one more Mayo Clinic visit to check pituitary gland. Not looking forward to this test. I have had the worst luck in connecting with people even in church. I had two friends for 15 years. They were those friends where you would go out have drinks laugh over your family silliness, your husband flaws. Life was great with these friends. Every summer we would golf once a week. Then this year my body decides to crash and neither of these two have called to see how I have been. We this last summer had a few dinners and they inquired about my Mayo visit and asked about my symptoms. Yet still don’t call. I thought okay “they are scared to ask”. I will ask! This week my husband was going to be out of town for three nights. Also two of these nights is were I know I would have a symptom flare up as my symptoms would be at its worst during my folluilar phase of my cycle. My text: “If I need help the next few nights can I call u? It would be just for dinner and getting kids to bed”. Her response: “Sorry but, I have my plate full with my family and job”. My heart is just broken! You invest your life into a friend(s) to just see them cave! It really has been hard trying to get close to those who are new. Anyway for what it is worth my story.
Hi Jamie, so sorry for this hard time in your life – the story is finished, and I’m no longer looking for interviewees. But I do so hope when the story comes out (MORE magazine, Feb 2014, I believe) it’s helpful to you in working with friendship and illness issues. One thing I learned doing this story is that it can be very hard for friends to understand what chronic illness means and how it is so life changing… wishing you well with friends and with your diagnosis.