March 30, 2012

Loss and Hope: Find Your Balance

The other day I listened to a teleconference on the results of a nationwide survey of more than 950 people in the lupus community—502 people with lupus, 204 supporters (family members or friends) of people with lupus, and 251 rheumatologists. The survey was designed to “evaluate the daily and long-term impact of lupus on health, family relationships, career, and quality of life, and to identify potential gaps in communication.” The results showed that “communication challenges are significant.” You can say that again!
  • 87% of people with lupus in the survey admitted minimizing their pain and other disease-related concerns to avoid upsetting their families, and 52% reported that they minimize their symptoms when they talk to their physician. Yet, 72% of the rheumatologists surveyed were not aware that their lupus patients are minimizing their symptoms!
  • 76% of the physicians believed it is the severity of lupus symptoms that has the most impact on people with lupus, but only 59% of the people with lupus agreed with that.
  • 51% of those with lupus reported arthritis/joint pain as the most prevalent symptom to affect them on a daily basis, only 35% of doctors ranked such pain as highly prevalent.
Regrettably, the communication disconnect is happening with family and friends, too:
  •  46% of those with lupus said they experienced fatigue on a daily basis, yet only 22% of their supporters saw this as a prevalent symptom.
  • 75% of those with lupus said that family and friends think they (the person with lupus) can do more than they actually can; 80% said their family and friends think lupus can be improved by eating better or exercising more; and 67% said their family and friends believe they can identify with living with lupus.
  • 78% of supporters describe themselves as “very supportive” of family and friends with lupus, while 52% of those with lupus felt that way.

I have a theory. I hypothesize that these disconnects may be due to our own unwillingness to show weakness. I mean, who wants to constantly be asking for help? Or talking about the pain? Or admitting that we forgot—again? More than half (57%) of those with lupus said the disease significantly impacted their self-worth. Do you really think we want to add to that by openly cataloging our every complaint? I for one am ready to admit it: I don’t share even half of what’s bothering me. And that’s not good.

It’s just that I don’t think people without lupus understand how hard it can be to let go of what we can no longer do. It’s been 19 years since I was diagnosed with lupus, and still every day I feel loss. I was angry for so long and I didn’t even know it. But that is not a healthy frame of mind, especially when you have lupus—a disease that is activated by stress. Indeed, the occurrence of stressful events has been linked to disease flares. The therapists and psychologists tell us it’s okay to grieve for our losses. But eventually we must focus on what we can do.

But there’s a remarkable thing about people with lupus—one that will always show up on any survey because it is a hallmark of this mysterious and complex disease: More than half (56%) of people with lupus reported feeling hopeful or optimistic.

As for me—well, to help make up for those things that are out of my reach now, in the past two years I have started to do some brand-new things, which helps me not miss the old things as much. I’m gradually sharing my lupus story in this blog. I started a coloring card business that will debut soon at (motto: you are never too old for crayons!), and began dating a wonderful (younger!) man who makes me laugh all the time, but also accepts me as I am. And because I used to be a wild child, I am learning to play the electric bass guitar. Take that, lupus!

Visit the Lupus Foundation of America's Web site for the rest of the survey’s findings.


jlemmerman said...

Thank you for this post, Jenny! This is both shocking and somehow not at all surprising to me. I find myself doing all of these things. The balance you identify of respecting your new (or not so new) boundaries, but still living in hope and possibility is so important. And will be lifelong pursuit for me, I'm sure!

Anonymous said...

I personally think that we don't like to show pain because there's no real point to it. Yeah, we've been given a crappy hand in life. Complaining isn't going to make it better. I rather push through the pain (when possible) and try to live my life to the fullest.

-16 year lupie

Je-Suis-Mallory said...

I am 19 years old, and was diagnosed almost a year ago, and am just now finding a doctor who understands what I am going thru this blog means alot to me it reminds me I am most certianly not alone! thank you for giving me some hope for later on down the road :)

Anonymous said...

Great Post!---Thanks..shocking but true!...I agree with all other comments to your posts!..Hard to find a good dr--the disease is not understood by drs..and can be very hurtful when not understood or have support from family and friend..What you said is so true!.. My family thinks its in my head...i should eat better..etc. etc...they have just distanced me. for long time..hard to accept-but I have..."God forgive them and all who do not understand what its like to have Lupus, Sjogrens, Raynauds, Vasculitis, Fybromyalgia, connective tissue, severe allergies and sinusitis , TMJ and SIADH- dangerously low sodium. The fatigue is overwhelming! I eat great- all organic, protein food..more fruit and vege's have helped! I've turned to Eastern Medicine- Holistic, acupuncture, PT, acupressure, the common supplements, fish oils, magnesium, black currant, flaxseed, Quercetin, Bromelin, Goldenseal/Echinea others excuse spelling) Suffering lots of flares now due to weather changes. Can't shake the flu and sinus infection for nearly 3 weeks!..I've learned to expect the unexpected from your body with Lupus..something always new...Best medicine, stay positive, pray, stay close to God, never give up..practice meditation, nurture you especially with lots of sleep,listen to your body. Its so hard to accept and believe @ times the body changes and pain. But to read this post helps me so much along with being part of Lupus Groups on Linked In and you! I stay positive..keep on going...smiling..never complain..just go with it..I don't let my disease define me. As a Life & Health Coach helping others is rewarding and healing. I love to help others, practice gratitude & stay close to good. I focus on my blessings! Pain we suffer is rough..yet pain is real but physical - we are spiritual beings. I tell myself that along with other mantra's and it helps. By no means is it an easy road! I think drs and family not understanding the illness takes the greatest toll...Yet we have each other for support and know we are not alone-what we feel is real and shared by others. Live life to the fullest as you can. Listen to your body and keep reading Jenny's Notebook!...Thank you so much Jenny! Carol

carol said...

so true! i never complain or tell anyone about my pain..i stay positive, close to God, practice gratitude and count my blessings!

I find most family and friends do not understand - think your making it up as survey says- for me that hurts. My family thinks its all in my head and has distanced me. No calls or contact since I got it 2 yrs ago. I tried many times to explain to them..they just dont get it as the survery says..No cure..we live with it..manage it and have a happy life in time. Each day something new can happen to your body. Stess & lack of sleep, weather changes bring on flares that can last for months. The older you are the harder I think it is. I was diagnosed @ 55 now 57. I have MULTIPLE diseases SLE, Raynauds, Fyrbromyalgia, Sjogrens, Vasulitis, Scleroderma, along with severe sinus, migraines,TMJ - and SIADH dangerously low sodium- very serious..lands me in hospital lots lately..For 2 yrs drs cant figure out the cause of any of these. They help me manage it. I dont define myself by my disease and dont talk or complain about it . I dont tell many people. they dont get it unless they research it. I have a terrific husband who is very supportive and great support system with Jenny and the Lupus groups on Linked in and
Keep smiling - never give up..but listen to your body..get lots of rest, eat a diet filled with fruit and veges and protein & supplements. I also use a Holistic Dr and alternative medicine along with acupuncture, acupressure, PT, meditation and I smile alot. I let go of things and live my life with love. It hurts when family & friends think you're nuts so I stay away from the negativity..but I love them despite all. God forgive them for they do not understand. Like all of you i stay to myself & dont complain. I keep the company of positive people who do support and enrich my life! That includes my dog Cody..a little loveable shitzu..he's bliss and a great healer. I LOVE LIFE AND AM VERY HAPPY DESPITE HAVING LUPUS. Others have it much worse. Our support to each other helps so much. More education and research is needed. The sad thing is that most family members and friends dont understand..think you are crazy and making it all up..even though the 20 tubes of blood I give every 3 months or more for checkups can cause me to pass out and land me in hospital. Bloods say it..dr tells them..yet they refuse to believe it..maybe thats their way to cope..i hold no anger but I do set boundaries. Live with love, have hope, connect with others who have Lupus and groups stay active and thank God you get up each morning to greet a new day
Much Love to all- Carol

Anonymous said...

so true! Never give up hope and surround yourself with positive people and love. Family, friends who understand and support you. Negativity, stress, lack of sleep causes flare ups and makes it worse.
Do whats in your best & highest good. Stay close to God, help others -its healing. I stay to myself like most do since people don;t understand and I am not a complainer. I'm happy to see the sunrise each day, have a loving husband, great dog Cody, support network like Jenny, and lots of love to give. The pain can be unbearable and unpredictable. I breathe, and go with it..and yes its ok to cry..its a great release.
Much Love & Healing Hugs

Anonymous said...

Very interesting and seeminly true but how do we deal with not only our personal issues but public perception as well.

I believe that we often do so well at minimizing our symptoms in public that they don't believe our complaints. And why should they when they see us managing so well? Then when we need time off, more meds, disability, they have good reason to believe it's not that bad.

No one wants to constantly complain or ask for assistance or special favors but I wonder whether sometimes we are our own worst enemies.