In sickness and in health... or so you were promised.

Dr Gary
By Dr GaryCA Latest Reply 2011-07-03 05:20:04 -0500
Started 2011-06-25 18:34:04 -0500

It seems like I am often reading posts from members who talk about spouses or partners who aren’t very supportive of them, who deny their condition, belittle them for having symptoms, criticize their medical regimen, and otherwise seem to deny them the support that they need during this time of need. What’s it been like for you?

The traditional wedding vows include the promise to take care of each other “in sickness and in health.” Even in the best of times, the challenges of daily life can present result in some dips and detours along the road, requiring some patience (or a lot of patience) and the willingness to make some unexpected adjustments and compromises. With some hard work and commitment, couples often find a way to keep going.

Life can throw some real curveballs. Chronic health conditions are one of them.

I have worked with a lot of couples who are facing this challenge, with conditions like diabetes, lupus, HIV, cancer, MS, chronic pain, and others. What I have learned is that each couple deals with it in their own way, some struggle more than others. To be honest, some get through it, and even grow closer. Some don’t.

While one of the partners receives the diagnosis, in many ways, both receive it. I probably don’t need to say this to you or explain why. Changes in activity levels, emotional reactions, diet and lifestyle management, medical regimens, paying for treatment… and other challenges.

In one way or another, life is never going to be quite the same. And it may be drastically different.

My idealistic side would like to assume that when one partner receives the diagnosis, the other will step up to the plate, jump in an do whatever has to be done to be a real support from the moment the diagnosis is received, and going forward from there. In sickness and in health…

But it’s not that simple. This is real life and not a movie. And real human beings are involved.

There are a lot of reasons why partners can’t always step in and step up to the plate.

“Why me?” becomes “Why us?” Just as the person receiving the diagnosis questions the fairness of the diagnosis, their partners have the same question. There isn’t an answer to this question, but it’s still human nature to ask it.

Sometimes it is simple denial. They can’t and won’t believe that their loved one has really received this diagnosis. It wasn’t the way they thought that life together would be like. And, at least for awhile, pretending like it isn’t there, or will go away if they ignore it long enough, can be a relief, though not a very long-lasting one.

Partners often feel helpless to “fix” the situation, and so they either react all over the place and try to micro-manage their partner’s life, or they don’t do anything and, instead, ignore the needs of their partner or even criticize them and tell them to “get over it.” I am not sure which reaction is more destructive to the relationship, but individuals facing medical diagnoses express a lot more distress and sadness when it seems that their partners have run for the hills or become their critic when they most need them.

The individual with the diagnosis may be experiencing fear, and their partner may be as well. Along with the fear factor can come a lot of scary images about the future, and what this mean both for each individual as well as for the relationship. Both partners may be reluctant to talk about fear because they don’t want to scare the other person. But fear can also go unrecognized, and be turned into denial. Lack of real information can play a role here. When we don’t know the facts our minds have a way of making them up.

I can say with optimism that, while a chronic condition can really throw a relationship off track, it’s possible to get it back on track, and even move to a new level of commitment and support. Here are some ideas to consider:

You are a couple, but you are still individuals. Each member of the partnership may need some time to deal with their own reactions to the diagnosis, to get a handle on their own emotions, their fear, frustration, anger, sadness, disappointment. It can be helpful to talk to an objective friend, or a mental health professional, to sort out these reactions and feelings, and get a perspective on them.

Get educated. Again, sometimes each individual needs to go off on their own and get informed. Or, this can be a joint project, including some information-gathering and talking to healthcare professionals. The best antidote for fear and helplessness is real information.

Chronic conditions result in a lot of elephants wandering around, and they take up a lot of space. Fear and helplessness are among the biggest. The best way to deal with an elephant is to talk about it, for each person to share what’s going on with them, their questions, their fears, their hopes. Communication makes the elephants shrink and wander away.

Remember that support goes both ways. Each member of the partnership has their own needs. The individual facing the chronic condition may need to spell out what they need, both on a practical level as well as emotionally. While it may seem like it should be obvious to the other person, it may not be. And it may be up to the patient to reach out and encourage their partner to talk about how they are feeling. And of course, this goes both ways. The best way to help a partner facing a chronic condition is to ask them what he/she needs and how you can best help them. Just like you need reassurance, your partner may need some too.

When partners can’t or won’t be supportive…

Let’s be honest. As you’re read in other posts, not everybody can step up and pitch in when their partner is facing a chronic condition. As a patient, you may come to the point where you can no longer tell yourself that your partner ‘just needs time” or is “using tough love” to help motivate you. Lack of support from a partner is lack of support, plain and simple.

Place your own self-care first. Sure, your partner may figure things out over time and be able to be a real team member on the road ahead. But in the absence of that, reach out for support where you can get it. Connect with friends and family members who can be there for you. This might mean getting a little support here, and a little support there, and piecing together what you need. Know who you can call upon and for what. It’s not ideal but it’s taking care of yourself.

Build up your support network with others who are facing your condition. Nobody gets what you are going through more than they do. Consider local support groups if they are available in your area. And of course stay in touch with your friends here.

Don’t let yourself be made to feel less than for having a medical diagnosis, or that you are lazy, or trying to get attention, or that you are somehow responsible for feeling the way that you do. In other words, don’t turn lack of support against yourself. Refuse to take on someone else’s negative attitude toward your condition, or to feel guilty for having a chronic condition.

Do what you can to deal with your own emotions and to build yourself up. Have a safe place to talk about how you feel – you may want to consider talking to a mental health professional. Do activities you enjoy, and that you can participate in. You might even ask your partner to join you. You might also want to consider building more spirituality into your life: look upward!

Work closely with your healthcare team. Take responsibility for taking the best care of yourself possible. Power up!

What has the journey been like with your partner? A smooth start? A rocky start? Are you traveling it alone at this point? Any stories to share? Any advice?


21 replies

Dev
Dev 2011-06-29 13:47:22 -0500 Report

In sickness and in health needs to work other way round too. The spouse of the person with diabetes goes through hell. They are worried, their life changes but they do not have control over the condition as it is not their body. So pretty much they are at the mercy of the person who has the condition to accept what has happened, learn how to take care of it and move on. The spouse can help in various ways but cannot force feed medication, food or make the diabetic understand / accept the seriousness of the situation. The only thing they can do is take the consequences if the spouse does not take care of his/her diabetes. Nobody talks about this or empathizes with the plight of the spouse.

You said in your post that in some way both receive the diagnosis but that thought is mostly in writing. I never experienced it reflected in the thought of friends, family, doctors or counselors. Everybody always focuses on the person with diabetes and forgets about the spouse. I have always heard lectures about how I should support my husband who is a diabetic but nobody has ever offered me any support or told him how to behave with me or communicate with me in this situation. As the spouse needs to step up, so does the diabetic so that the couple together face the challenge.

The first thing we did when we learned that he has diabetes is to find a comprehensive care center so that we will have all the doctors etc at one place. He was told that he has to attend the mandatory four diabetes education sessions before he can even ask for an appointment. In none of this system the spouse needed to attend the sessions. It wasn't even suggested. When I went with him for one of the sessions, she reluctantly said I can sit in.

If I go to the doctor's appointment with him the doctor never even looks at me. Nobody ever looks at us as a unit that is affected, not even the counselor, the dietitian. It is easy to say step up, but difficult to do so when it feels like nobody cares what you are going through or the fact that you need help too.

Parag and I had an uneasy few months to figure out what kind of support he needed, how much space he needed and how much communication I needed to feel less scared and more in control of the situation. We constantly have to readjust and find balance as time goes by. I am glad that he took the condition seriously from the beginning and I did not have to agonize over ways to make him understand without making him feel like I was bullying him. His father died that month and it jolted him in taking care of himself seriously. But if that hadn't happened and I had found myself with a spouse that does not care then what was my support system? nothing. There is absolutely no support system for a spouse of a diabetic.

to the diabetic you can say, it is your health and you should take care of it in spite of the support or lack there of from the spouse and family. But for a spouse what do you say? It is your life so do something but it is not your body so actually you can't do much.

Dr Gary
Dr GaryCA 2011-07-01 16:10:29 -0500 Report

HI Dev,

Thanks so much for telling your story. You really did a great job of illustrating exactly what I meant by in terms of how the diagnosis affects both the patient and the patient's loved ones. Yes, both the patient and his/her partner needs education and emotional support.

As you said, unfortunately the spouse may is expected to step up to the plate and be supportive but may very be feeling totally under prepared and overwhelmed.

There are support groups available for spouses, but on a limited baiss, if at all. And medical professionals don't reach out to spouses of diagnosed patients, or have the time to. So they are definitely overlooked and unsupported.

Patients and spouses are dealing with their own feelings and concerns, and they may not know how to communicate with each other. This is uncharted territory, a learning process for both members of the couple. Couples are left to figure this out on their own.

Sometimes the gap is bridged, sometimes not. Help is not offered at the level it should be, and those who need it may not know how to ask for it, or even think to ask. Again, this is uncharted territory that can really be a challenge.

Thanks again for sharing your experiences.

Gary

VickieF
VickieF 2011-06-29 18:16:08 -0500 Report

You know Dev, you are so right. On this point as I was reading your response, I thought " would it not be nice if Dev could start a spouses/family support group."
Wheather it be online or meeting somewhere or both. I think it would be very helpful.
I would lend a hand when needed, but I am the diabetic. I have also spent close to 30 years as a caregiver. I also took care of my Mom and Dad for years, my Mom was diabetic, my Dad had a stroke. So I can say I've seen both sides.
Vickie

Dev
Dev 2011-07-01 15:04:34 -0500 Report

Thanks for the idea Vickie. I have more like a diabetes support group going on right now because friends and family have diabetes, or are prone to diabetes. For support for myself, I just hang out on DC and force myself into the discussions whenever I need to vent or feel like sharing my experience. There are some caregivers here but very few compared to the number of diabetics.

MewElla
MewElla 2011-06-29 13:55:00 -0500 Report

I so totally agree with your conversation. I lived my life for 18 years taking care of my husband who was a heart, diabetic, chronic peracardities, etc problems and while everything was, and should have been focused on him, I felt like I was alone in this world. No one on staff of hospitals, etc ever had time for a kind word or smile for me..We lived in high trauma for many, many years with severe financial problems (me trying to figure out how to pay for all of the treatments, bills, food, etc) my health was upside down but I had to be the provider and caretaker. My heart aches for you as I cry softly in remembering this part of my life. I dearly loved my husband lost him on our wedding anniversary…it is like one half of me is gone…God Bless you, my friend I so truly, truly understand what you are saying.

Dr Gary
Dr GaryCA 2011-07-01 16:11:43 -0500 Report

Hi MewElla,

Thanks for checking in. You give a very good example of the great need for spousal support that is not available like it should be.

Gary

Dev
Dev 2011-07-01 15:00:05 -0500 Report

Thanks for the empathy. I was dreading to post all that I felt for the fear that somebody will say, I was being a drama queen for no good reason.
but now I feel much better that I wrote down how I felt. Two years of pent up frustration. lol.

Graylin Bee
Graylin Bee 2011-06-29 13:12:24 -0500 Report

Tough question Dr. Gary
"in sickness" I am stronger and I am weaker and I am different from who I was. He has said the same of himself. As a couple it is also true.
Within 3 years we both faced something that could have cost each of us the ability to walk.
His incomplete spinal cord injuty could have paralyzed him but didn't. After surgery his surgeon came and told me he didn't know how he had been able to walk into the hospital.
Nearly 3 years later, while I was having a 6 hour MRI, my Infectious Disease Dr. was telling him he didn't know if they would be able to beat the MRSA that had invaded the cellulites in my legs. He didn't know if they could save me or if I did survive if they would be able to save my legs.
We are still standing beside each other. Trying to do what the other one can't. Laughing at stupid jokes. Getting on each other's nerves. Trying to understand each other's fears.
The first 2 years after his surgery was very hard. We had hoped life would go on as before like the disc had never herniated. But it had damaged the nerves too badly. He became depressed and expressed suicidal thoughts. Besides the loss of his job and physical problems, his dad had died the day before his surgery. It was just too hard on him. He had to cash in his retirement funds because the insurance company denied his disability. My job did not come close to covering all the bills.
Then I got sick and ended up in the hospital. Besides telling me I hd MRSA, I was told I had diabetes. They were able to get rid of the MRSA. But there was still a problem with my legs. The reason I got cellulites was because my leg veins were malfunctioning. They were leaky and caused edema. So two leg surgeries to fix the venous reflux (or venous insufficiency) were done. Then came a "oh you might have cancer scare. Luckily it was only a scare.
My husband became very good at doing the compression wraps on my legs during this time. The wound care Drs., nurses, Ultra Sound Technician and the vascular surgeon complimented him on them. He also was learning about Diabetes to help me. Lucky me he is a good cook and enjoys doing the cooking. For 6 months it was up to him to do all the cooking.
He waited with me in pre-op through 3 surgeries. Laughing at my stupid Danish Knock Knock jokes. He annoyed me by being able to sleep when I was too scared to be able to shut off my mind from all the cancer fears. He may have understood why before the cancer scare surgery I kept saying "I will think about that after Aug 2nd."
There were times I wanted him with me and times I needed to face it alone when going to Dr. appointments. He respected my choices. Some things I was not given a choice and had to face alone.

Dr Gary
Dr GaryCA 2011-07-02 21:12:19 -0500 Report

Hi Graylin Bee

This was beautifully written, as always. Thanks a lot for taking replying.

It seems that the journey of illness changes all of us in so many ways, whether we are the patient or the caregiver. The experience introduces us to aspects of ourselves that we previously unaware of, strengths and inner resources that we never knew we had. We tap into new reserves. But humans are human, and humans have limitations. Some spouses are able to step up to the plate, others can't or won't, or need more time than others to adjust to the new normal. Everybody has their own experience.

It sounds like you and your husband have grown from this experience, in spite of the challenges. You are fortunate to have each other.

But you bring up a good point. There are times when you need to be alone, times when you need to face things on your own. Being aware of that, and communicating your wishes, is taking good care of yourself.

Thanks again! I hope you are having a good weekend.

Gary

Armourer
Armourer 2011-06-28 21:18:15 -0500 Report

It all started in 1993 when I had a brain-stem stroke at age 39. Although very supportive at that time, I've never really known what she thought. Four years later was told to medically retire by doctors. She went out the next day and got a job that she has been at for 13 years! She is a great mother, and will be a great grandmother when that day comes. But…there is a gulf between us caused by my retiring and diabetes. My health continues to decline and we can't talk about it at all. For her it is "be a man and buck up.!" She would have been a great pioneer woman! As for the food budget I get $50 a month, and I better not use any of the family foods. I must buy everything I need with the $50. My own bread, butter, etc., because the rest of the family think my foods taste terrible. Extended family is terrible. For this coming July 4, many foods are being prepared, none of them can I eat. Am told too bad! So I will sit by and watch. I'd take something of my own but it is the end of the pay period and have little food left in my budget. Thanksgiving & Xmas is very bad, in the past was told not to bring my own food. So I drank 2 cans of V-8, later I just didn't go, then I said stick it, and took my own food. My family bake goodies & eat goodies I can't and don't care, in fact they often tease, and it hurts that they are so insensitive. I think of devorce, but vowed to myself not to ever do it, my grandmother married 4 times, her son three times, his sister 4 times, my sister 3 times, my mother 2 times, etc., but it is now just little in common. But if I left, where to go? What to do? & who cares?

Dr Gary
Dr GaryCA 2011-07-02 21:35:39 -0500 Report

Hi Armourer,

Great to meet you. I don't think we have been in touch before.

What a difficult situation you are in. This is a good example of how some spouses really rise to the challenge but also try to be reallly supportive and compassionate, while others just rise to the challenge but let the person facing diabetes fend for themselves, as if it was their fault.

I suspect that your wife is suffering as well, and doesn't know how to talk about it. And as others have said, there just isn't enough support made available for spouses. Everybody is affected, everybody needs help.

The diabetic diet is really a healthy diet, and and can be a tasty diet. I am not a dietiecian but I know that high protein, no sugar, low carbs is a good way to eat. That is the diet that I follow myself.

When clients are living in a difficult situation I try to encourage them to look at what is working, what keeps them there. Children? A level of stability? Life is trade-offs, and if you can focus on what is working in your life, then maybe this will give you some perspective.

But still, you deserve to be treated better. The way your family uses food to punish you is very sad.

Have you and your wife talked to you doctor to help educate her? Have you received any type of couples counseling? Have you asked your wife to talk about how she feels, how you can help and support her, and let her know what you need? I am not trying to be too idealistic, but am wondering if there might be something that you could all do to make your lives together better.

I don't know if this is helpful in any way. I want to know that my thoughts arei with you and I hope you will be stay in touch with your friends on Diabetic Connect.

Take care,

Gary

Armourer
Armourer 2011-07-03 05:20:04 -0500 Report

She has been to diet counseling but she just doesn't talk about her feelings very much. She is a positive person but doesn't like social situations, she just likes her family, and after 25 yrs I'm tired of them. I've given up being social for her. My eldest child just got engaged last night so it isn't the children that we stay together. Guess in part it is the money issue, we need what each other brings in to survive, plus I just hate divorce! I've realized that I just don't need a companion in my life, and if she was out of my life no big deal. Guess in part it is because I'm on disability and have other health issues, I just feel that I have nothing to offer society. I've had three therapists tell me that there is nothing that they can do for me in my situation. My former job as a photojournalist is basically dead, the jobs are just drying up across the country. The things that I'm interested in have no dollar worth for a person to live on. So I just sit around, some days I don't even get out of bed cause there's no need to.

My wife would have made a great pioneer cause she is just able to buckle down and endure. She is one who can eat just one Lays potato chip, and another one the next day, etc. We get along fine as long as there isn't food, or money issues. I stay in my office, and she has the rest of the house. No couples counseling cause she would have to miss work and we can't afford it anyway.

25 yrs ago wouldn't have thought life would be like it is right now. Really can all point to when I had a brain-stem stroke in 1993. All health problems, loss of work, can be traced to that moment. I've tried to adjust, sometimes I do well, and others I don't. In 57 years I've nearly died four times and I'm still here. Still tryin' to figure out what I'm suppose to be learning or doing.

jayabee52
jayabee52 2011-06-28 06:20:00 -0500 Report

Thanks for sharing that Dr Gary. I know what it's like to be divorced like that. I was foolish and didn't take care of my diabetes as I ought. My wife at the time, "S", got me with the pastor of our congregation and told me that she would divorce me if I didn't take care of it. I didn't want to lose her and so I did start to take care of myself. She didn't divorce me until a couple years later.

I had been having intermittent problems with ED and she thought I was losing interest in her. When she dropped the D-bomb on me, she couldn't give me a clear answer as to why. Some of my college friends asked her why, and the answer she gave was telling: She said she was afraid I'd stop taking care of my DM and then I'd get serious complications. Then she'd be stuck taking care of me!

I think that came from her mother. Her mother "J" felt trapped by her husband "R" and couldn't divorce him because he was the only source of income for their family. And then R got seriously sick with shingles and other problems. When my ex called her mom and cried to J about how things were going in our relationship I'm sure J told my ex to get out while the getting was good. My ex had just gotten a job which by itself would match the annual gross money we were able to make together in previous years.

So "In sickness or in health" went out the window. She had made the decision in March 2001 to divorce me she told me later. She waited until June (at the marriage counselor's office) to tell me she wanted to divorce so that there wouldn't be a problem at #1 son's HS graduation. She had it thououghly worked out.

I had thought that her new job would give me opportunity to not work so hard and to try to go to school for RN training, and do even better for our family. But that was not to be. In fact she urged me to quit one of the 2 jobs I was holding down. I think it was largely because she wanted to cripple me financially (which it did for quite a while) so I couldn't get custody of my sons or the house.

Well, that's my story.

but not entirely. I continued to care for my DM and worked sometimes around the clock to improve my finances. But I think my ex had a "got'cha" in her life in Nov of 2002. She had a heart attack by which she needed 5 bypasses. She is finally overcoming much of the damage which she had with that. Fortunately her new husband is helping her cope with it. (they married less than a year after the divorce was finalized)

I thought that I would be all alone for the rest of my life. I wanted to have a relationship again, but I had very little good fortune in that, until I met "Jem" online.
Jem was exactly what I needed to salve the hurts from my previous marriage. We were so compatible it was amazing. We believed that God made us for each other!

Of course we both had multible "medical challenges" and we each knew it, so that was not an issue for either of us. We just wanted to enjoy life with one another as we could for as long as we could.

Now I am alone again as Jem passed from this life in July 2010. I pray for God to bless me again with someone similar to Jem.

VickieF
VickieF 2011-06-28 21:49:34 -0500 Report

Hang in there and don't stop looking James. After 2 failed mariages I also found my soul mate online. Three months into our relationship I almost died from a kidney infection that went septic. He wanted to stay at the hospital with me. I had enough sense left to send him home (He has a very bad back and can not stand or walk for more than a few minutes at a time). He was at the hospital every day holding my hand (the only time I could sleep due to halosinations from meds.) When I got out he took care of me and scolded me when I had the halosinations at night and did not wake him so he could chase them away. He still supports me with my insulin and eats and reminds me gently to take my meds and eat when I should and to test my sugar.
I pray that you find another "Jem" or maybee a dimond in the rough.
Vickie

Dr Gary
Dr GaryCA 2011-06-28 20:00:44 -0500 Report

HI James,

I remember that you had a "Jem" in your life. It sounds like she was a gift that helped you to overcome the pain of your past relationship.

Your store is an example of how spouses can become self-serving and downright cruel when when a chronic condition enters the picture. They behave this way out of fear, frustration, disappointment, helplessness. Some are willing to step up to the plate, face reality, get educatied, be supportive. Others react out of their fear, and behave in a way that they may regret, while also hurting the person they love. This is a shame.

I know this was huge setback for you, and it says a lot about your determination that you were able to do what you needed to do, and get on with your life. You are a survivor, and an inspiration. It's about living life on life's terms.

Thanks a lot for telling your story here. I hope a lot of people read it!

And I hope that you find someone special to bring into your life!

Always great to be in touch,

Gary

jayabee52
jayabee52 2011-06-29 04:44:35 -0500 Report

Actually I met "S" at the rehersal dinner for our #2 son, for the first time in about 2 yrs, back in oct 2010.

She was pleasant, and we chatted in the kitchen for a bit. Then I went out to the back porch where most of the wedding party was. Jem had passed from this life by then, but I had Suz, a friend with me who went to the porch with me. Suz left the porch to go back to the kitchen for some reason when she found "S" just bawling on a friend's shoulder. Suz was a caring person too so somehow got "S" to cry on her shoulder while she expressed her fear that S wouldn't see me alive again. When Suz told me this I was rather puzzled and wondered to myself if "S" had second thoughts about what had happened in 2001 & 2002. I knew the strong feelings she had against me which led her to divorce me, but it almost seemed to be a complete about face for her. But she is married to another man now, so I leave sleeping dogs sleeping.

It will be interesting to see what happens this coming October when my #1 son gets married in Detroit.

And when I met Jem (or rather I should say she emailed me) I had been looking pretty hard for another lady, but had gotten no where and was taking a breather for while from trying to find someone. That's when she quietly introduced herself, and we took it from there.

I will continue to look, but probably not so hard as I had after my divorce.

Dr Gary
Dr GaryCA 2011-07-02 21:39:56 -0500 Report

Wow, James, what a story. Yes, I suspect some serious second thoughts, a lot of regrets. But you're right, the past is past. We don't understand the choices that people make, but they do. We think a chapter is closied for good, but the story of our life takes another plot twist. It just again proves that you never know. And another plot twist coming up in the fall. Very interesting. Thanks!