As you'd expect of any couple married for 33 years, Gregg and Sherrie Piburn have faced relationship issues of various complexity. Unlike many couples, the Piburns have dealt with the difficulties that come when chronic illness and marriage intertwine.
Sherrie has struggled with debilitating exhaustion, muscle pain, migraines and severe depression. After her diagnosis of fibromyalgia more than 20 years ago, “Sherrie and I learned that chronic illness can drive a couple apart or bring them to a higher level of relationship,” says Gregg. He chronicled the couple’s struggles and triumphs in Beyond Chaos: One Man’s Journey Alongside His Chronically Ill Wife, excerpted in Arthritis Today in 1999.
“Chronic illness sneaks into your house and robs from everyone who lives there,” he says. “People tend not to communicate about it. Instead, they try to hide it, or the well person says, ‘That’s my sick spouse’s problem, not my problem.”
Key to the couple’s success was realizing that chronic illness also affects the “healthy” loved one. “I know Sherrie’s experience has been much tougher than mine,” says Gregg. “But having her realize how it affected me helped us band together. We have become allies rather than competitors.”
Although she now also has osteoarthritis, Sherrie’s health has improved, and she teaches part-time. She’s learned to accept her condition and to use techniques suggested by physical and occupational therapists that help conserve her energy. She feels well enough to enjoy long walks with her husband and 2-year-old granddaughter, and accompanies Gregg when they speak nationally to couples and families facing chronic illness. Marriage and relationship issues are central to their talks.
Even Sherrie’s improvement presented a challenge to the couple’s relationship, as she reveled in a sense of independence she had not felt in many years. “When I was ill, Gregg treated me like a china doll. He was used to being the caretaker. Now I want a stronger role in our relationship than I was capable of before,” she says. “You have to hash it out again, just like when you were first married.”
Gregg agrees. “For years, I took on the role of a martyr who tried to be everything to her. I thought that was who I needed to be, but it wasn’t healthy for either of us,” he says. “With Sherrie’s help, I learned to allow her space to grow.”
Today, Sherrie and Gregg say their marriage is stronger than ever. “If you do some things that are courageous – like really being honest with one another – your relationship can grow, no matter what,” says Sherrie.
Marriage and Chronic Illness: One Couple's Story
By Adrienne Greer
Mitty 24 Oct 2009, 23:31 |
| I am 43 yrs old and my husband 48 yrs, we have been married 23 yrs and I have been diagnosed IC in 2003, a bladder disease that causes great pain in the lower abdomen. My husband and I have had trouble in our marriage since 2003. He was to busy trying to take care of me that we lost sight in what was important. Love never dies but it changes in time and illness that to me it's lost. With anything in life it needs works. I find that doing things together that you both like helps. If you are too ill then communication is a must. I always remember what brought us together in the first place. Which was friendship, love, kindess, talking with each other. |
Bob M. 17 Oct 2009, 23:06 |
| It has interesting to read some of the comments especially from the younger people about being diagnosed with RA at such a young age. i can certainly identify with them as I had my onset at 23 while I was serving in the Air Force unloading 300 # ammo boxes we used for airdrop out of cargo planes which I crewed on. I tore smy shoulder muscles in the process eventually causing the onset all over my body of the RA. I had to take an early out with few benefits having to go on permanent disability. I felt like I was falling apart not knowing what was happening to me and how I was going to get better. I was depressed and cried frequently with my girlfriend who after some extensive therapy in the hospital got stabilized to the point where I was able to go to college and get a degree with a job in another field. I worked awhile in this field until I was no longer able to do it physically then got into a less physical job where I worked for a number of years until the RA got worse and I had to go on disability again. I then worked at a series of sales jobs as an independant contractor until my health got to the point where I was unable to work fulltime. I then volunteered for a number of organizations and clubs serving others which is fulfilling but frustrating not to be able to make much money. My wife is retired since 2002 and has adequate income but I feel guilty (she sometimes also lays a guilt trip on me) about not being able to work a full time job. I am now 60 and still trying to get part-time jobs to bring in extra money. Several months ago I tore my right rotator cuff and disconnected one of my biceps cutting a big tree down on our property so am able to do even less now. Medical co-pays and charge card bills have been piling up keeping me strapped month to month. Sometimes I feel like I'm stuck on a treadmill. Our daughter is now living with us with her 2 young girls to help take care of while she is getting a divorce and working. |
Maureen 05 Oct 2009, 13:29 |
| This is for Wessy. I understand how U feel. I have severe osteoporsis and osteoarthritis and my husband is a prince when I have bad days. He does everything for me on those days but when I have good days I try and make it up to him. I think your wifes treatment of U is not personal. Its just she feels maybe guilty or so sad/ddepressed that she cant do the things she used to do and she may be afraid of losing U ! I feel guilty when my husband has to do the housework and cooking and cleaning and I have to check myself for the anger that I cant do these things anymore. Sit down and have a heart to heart talk with her. Im betting that the anger isnt with U. Its with her disease. Hang in there. It sounds to me that U are a wonderful and loving husband. Pain makes people lash out at the people closest to them. U need to have time for yourself too. Taking care of a loved one is very hard work and U need a little R & R to relieve your stress too. |
keri-ann 16 Sep 2009, 22:01 |
| I have just recently been diagnosed with RA at the age of 23. It has been the most difficult and challenging thing I have ever experienced in my life. It hit me at the worst time full time nursing student. It was in every single joint in my body and I could litterally not get out of bed. I have an amazing Dr and nurse that have put me on a excellent tratment plan. But it is so hard to deal with a disease hardley anyone my age has. Anyone out there that is young like me have anything they would deem helpful please share! |
Elysabeth 30 Aug 2009, 02:36 |
| wessy, I am a 25 year old woman with severe Still's Disease for the past 5 years, first started when I was about 10. I'm single and living independently by myself. I'm very sorry that your wife doesn't appreciate everything you're doing for her. When RA strikes suddenly it seems like a great catastrophe that you can't possibly cope with, but over time it does get easier even as the disease progresses, physically. She is probably completely overwhelmed (I know I was) and doesn't know how to deal with it. Honestly, I think you just need to be straight with her. Doing things on her own, though it's hard at first, will actually help her to feel MUCH MUCH BETTER (x1 000 000), and be more confident about living with this disease. Tell her you are happy to help but that you need your own time, and some nice recreation time or a date together where it's about fun and not about the RA might be a good idea. :) If she needs a lot of help moving around or with daily activities, get her to an occupational therapist to talk about devices she can use to do these things more easily. Anything she can do to feel more in control of her life with this disease is worth doing! You might also want to think about going to counseling together, I got some counseling in the beginning and it really does help. If the AF has any education programs in your area they are FANTASTIC too. RA isn't the end of an independent life. I do have quite severe disease all over my body (I have been in hospital for it and have active disease in virtually all joints, spine and some internal organs) for the last 5 years and am definitely disabled but I still enjoy going out for short walks and exercising as much as I can, I take pride in caring for myself, I do all cooking, keeping my home and garden and 2 cats, starting a career from home in graphic art and design, going out with my friends, dating, dancing even, sometimes! Spending time on the beach and traveling; I really do live a full and active life with arthritis. Sometimes I am literally crawling just to get to my bathroom in the morning but dammit I get myself there and feel GREAT because I DID IT! :D Celebrate small victories over the RA with her, maybe ask her if she would like to help you wash the car! It could be a lot of wet splashy fun. ;D There is honestly no reason why you can't go out and yes, party together, I do it all the time. She might have to spend more time sitting down or go home earlier but it's much more fun with friends than it is to sit around at home watching TV and feeling sorry for yourselves! :) You both deserve to have FUN, RA or no RA. The more she finds she can still do, and do well, if a little slower or more carefully, the more she will feel like she is the one in control of her life. It takes a lot of small steps but you really can FULLY enjoy your lives with this disease together. :D It's so hard to imagine in the beginning but it's possible. All the best to you both, I know that marriage and family with this disease will take a lot of work when I get there myself but I think it could be great. Just think of how much stronger your relationship together will be! :) |
Nikki 10 Jul 2009, 17:17 |
| Jamie, I was dx'd with JRA at the age of 10 and I'm now 30, so I think I am a great person for you to talk to! Please feel free to e-mail me at: Nikki@ArthritisAwarenessWear.com Take care, Nikki |
Jamie 10 Jul 2009, 00:54 |
| I was diagnosed with arthritis when I was only nine years old. We had hoped
I would grow out of it. Well I'm 23 now and I thinks its a keeper. At age
18 I was diagnosed with lupus, but thanks to my wonderful new Dr. I now now
after five years that is a myth. I do on the other hand have osteoporosis,
which scares me to death. I was perscribed methotrexate about a month ago,
which I have previously taken with great success, but now I feel worse than
I did before I was taking it. My pain has become intolerable and the
fatigue is much worse (which I didn't think was possible). At the moment I
am trying to work a part time job and balance a normal lifestyle of sort.
It is so hard on me not knowing anyone my age who has the same problems. If
anyone has any advice I would love to hear it. Prayers to all. |
wessy 09 Jun 2009, 03:30 |
| I am the spouse of someone who suffers from RA. i am 26, and she is 30. She was diagnosed about 5 months ago. I have tried to be the most supportive loving positive caring patient person with her because i know she is constantly in pain and tired all the time. I work, do all of the chores, sometimes help her dress, cook, help her walk, and sit, get up and move. it has always been my pleasure to do these things for her. I feel i have reached a point that no matter what it is i do for her she never seems to appreciate it. I feel like she takes out her pain on me like im the one who gave her the disease. I am doing things for two people all day except when i am at work...when she is up in pain at night so am i. When i dont wake up first thing in the morning because i am absolutly exhausted, my wife seems to carry a grudge for not being awake to help her. I feel like i have given up everything to be there for her, but sometimes i need to do things for myself. Im not asking to go out and party or to go have fun, im talking about cleaning out my car or visiting my family or getting online once in a while, and the only time i feel not guilty for doing something for myself is when she is sleeping because that is the only time she doesnt need me. But if i do that, she tells me when i come to bed i wake her up and she gets mad at me. Am i being selfish and wrong of me to want some time for myself...not away from her..still in our house... but just alone and for me? Why is she the meanest to the one who helps her out the most? Please help.... |
Lizzy 07 Jun 2009, 04:41 |
Oh dear, My heart goes out to all of you. Tears are falling on my keyboard. I know of your physical pain, and the memories of hiking, skiing, kayaking, walking, running, feeling pain free and then WHAM!!!!!!!!! Once you were a young athletic person or dancer or just a PERSON and now you feel left out. Why would your friends understand the magnitude of your illness? RA? What is that? Osteo arthritis? Well we all have THAT! Although there is also a severe form. So my heart goes out to this community of sufferers with no common network of support. Cancer? Well, hey. Now you have a community. I am so sad, and so by your sides. It is so hard to have a spouse and child that WANT the old you. Some days are gloriously pain free - and you get on this MANIC high - only to overdo it and then you wake up with the usual pain. There is this new book just released: www.cookingwitharthritis.com and the aspects of sharing recipes and our disease have helped me. I will buy, Beyond Chaos. That sounds good. Thanks for the advice, and for listening, and crying with me. I know we can all get through this. Hope...hope. |
Lizzie 21 May 2009, 08:27 |
| Good Morning all! i'm not married, yet, however my boyfriend and i live together and God love him for putting up with me on certain days. I was diagnosed with OA in my lower back last year at 29 and it turned my life upside down. I'm a very independent person, i usually work 2+ jobs at a time, along with taking care of our home. I now can barely get through my full-time job on some days, i have to ask for help (which is VERY difficult for me to do) and i've had to learn my limitations. but i have to say that i am doing better now, although i still have roller coaster days, but getting involved with the Arthritis Foundation was one of the best things i could have done for myself...it's given me people to talk to and it helps so much to know that i'm not alone. and as much as my boyfriend tries to help and understand, he just can't b/c he's not going through it. Heather, exercise is my saving grace most of the time. i haven't made the time lately with other stuff going on, and i can feel it. Tai Chi is awesome and i would look to see if there are any AF Exercise programs going on in your area. I'm now certified to teach that class since i can no longer teach dance. Everything happens for a reason. I wish you all the best, i know this is not fun to deal with. But remember, God never gives you more than you can handle. |
Sydney 19 Apr 2009, 18:05 |
| Rachel - I totally understand. I was diagnosed 4 weeks ago and all I can keep thinking about is that I am only 29 years old. My life is not even started yet. I was planning on changing careers from being an accountant to a teacher. We are trying to start building a new house. My husband and I were planning on starting a family at the end of the year and I feel like our dreams are just put on hold. He has been great but I knew the pressure would get to our marriage sooner or later and that was today! I am already carrying so much on my shoulders and then the blow up today just made it so much worse. I feel so isolated like no one understands. I feel like I have no one to talk to or vent to. I am tire of people asking how I am feeling. I feel so angry but I know that I should not be that way. I go to the doctor Tuesday - I hope he can help! |
heather 14 Apr 2009, 15:02 |
| in response to not being used to this, I am only 33 and was diagnosed with RA at 30. my husband helped even to the point of getting me dressed at times up until I finally was given medication that allows for some comfort. My husband had already undergone back surgery and was in need of another, so I was accustomed to being the caregiver, and I had a very hard time with it at first. in a very unforunate turn of events, he passed away shortly before my 31st birthday leaving me to be parent & sole provider for our beautiful daughter (who is now 11) I am doing mostly better now, but still have frequent flare ups. i am currently on hydroxychloroquine, prednisone & methotrexate. my doctor wants me on Enbrel to help improve & prevent joint damage but my copay is nearly $500 and I do not qualify for any help thus far... Still, knowing that there are much worse things in the world & having God to lean on when the pain gets near unbearable helps to keep me on the positive side of things. In January I began looking for other ways to help & have been noting how my body reacts to different foods & activities - I feel much better all the way around when I avoid salty foods and sweets plus I have added a light exercise regimen that I hope to increase. I have found that concentrating on the things that I do have helps me to deal better with the things that I can no longer do on my own (like my own gardening which I love). |
jacqueline Guttman 30 Mar 2009, 15:54 |
| I've had "moderate to severe" RA since I was 27; I'm 66. I, too, am better that I used to be and, in fact, work at a pretty stressful job, albeit part-time. Now, in response to the person who wrote, "I'm not used to being this way," is anyone? Does anyone like being dependent? Does anyone like asking for help? Of course not! Think - do most people like GIVING help? Yes! Therefore, if you allow someone to lend a hand, you are doing something POSITIVE for them, not negative. I speak of people other than spouses, with whom it's important to find a balance. When I had my first knee replaced 19 years ago, it was clear to me that my husband kind of missed being "Derrick" (my nickname for him when he hauled me up from chairs). Now, after nearly 45 years of marriage and care-giving, he has his own physical limitations as well, and we help each other. By the way, we are two tall, pretty sturdy-looking people - not "old" at all, but we both need help with stuff. What has saved us? Some couples therapy and a really good sense of humor. As for me, with friends falling apart and even, unfortunately, dying, I'm suddenly no longer the one everyone needs to feel sorry for. Fascinating. Life is always changing. |
Rachel 26 Mar 2009, 11:47 |
| I have a hard dealing with my situation. My dear husband tries to understand, but its hard for a person to understand when his partner of 6 years all of a sudden gets knocked down with a disease that allows her to have limited activity. We use to climb hills in the snow and have so much fun. It is also very depressing for me because I am not use to being this way. I cry all the due to frustration and pain. I hate everyday and there are times when I dont want to wake up because in my dreams I am rockclimbing and hiking. The medication I was taking stopped working for me and I am trying to be patient with the new medication I am on. Who thought of this crazy disease and why does anyone have to suffer, I am not done living my life yet and as I lay in bed i wonder how am i suppose to fininsh what I wanted to do? so depressing for me. I hate it because i am not even 35 years old yet! |
Logarexx 23 Mar 2009, 19:05 |
| Hi guys! I have a serious trouble with my stomach. My doctor said me get
Loperamide. What you think about this drug??? Is it really good? He gave me
<a href=http://buyloperamideonline.freehostingz.com>this</a>
link for full information. P.S. Problems began after I got milk shrimps and beer. |
When he asks what is wrong, I tell him it's just that my ____(fill in blank) hurts and he says "how do you think I feel?" because he works at a hard job all day-then he walks off. I do a desk job.
I try so hard to get information to give to him so he can understand what I am going through but I end up tossing the info in the garbage because I feel like I am bothering him.