Dancing in the Rain ™

It's not about waiting for the storm to pass, it's about learning to dance in the "RAin" when you live with Rheumatoid Arthritis and other Chronic Diseases.

Living with Chronic Illness: Six Tips for Keeping Your Relationship Strong

on February 5, 2013

Living with Chronic Illness: Six Tips for Keeping Your Relationship Strong

Relationships are difficult when you are in the best of circumstances. When you add in other factors like financial problems or chronic illness it can be downright impossible to keep things happy and healthy between you and your partner. It’s not impossible, mind you, but it does make things much, MUCH more difficult.

I want to discuss the effect of illness on relationships because it’s something those of us with chronic illness, like Rheumatoid Arthritis (RA), deal with every day. The problem is no one really talks much about it. And I think we need to. I think it’s important for people to share their stories with others so that we don’t feel alone in our struggles. So, today I’m going to share how RA has impacted my relationship with my husband and the methods we use for getting through our bad days and celebrating the good days.

1) Move through the grieving process(es) together

You may think that this rule only applies when you first get diagnosed, but it happens more often than you think. In my blog post “Rinse & Repeat: A new stage of grief for chronic illness” (http://idanceintherain.com/2012/03/rinse-repeat-a-new-stage-of-grief-for-chronic-illness/) I discuss how every time we lose an ability like being able to walk, or our condition worsens dramatically or we end up being diagnosed with a new disease, we move through the grieving process again. Recognizing those moments and understanding that it’s okay to grieve the loss of your health, or your ability to do something you love, can make the entire process a little easier.

When you are in a relationship, it’s important to realize that BOTH of you will have your own grieving process. When you are first diagnosed, you have to re-evaluate your life and figure out how you are going to adjust to living with your illness. You are grieving for the healthy body that in now lost and the things that you may not be able to do in the future. But you also need to know that your partner is grieving too. They are grieving for the loss of their partner as they know you. They are just as scared as you are about future events and how this new disease will affect the two of you and your life together.

As time goes on, you may find you are diagnosed with additional diseases. This is very common with people who have autoimmune diseases. It seems like we’re always adding another disease to the list. For me, two years after being diagnosed with Rheumatoid Arthritis, I was also diagnosed with an rare autoimmune liver disease called Primary Biliary Cirrhosis. It’s similar to Autoimmune Hepatitis, but instead of attacking the liver, my body attacks the bile ducts within the liver. There is no cure and I am not able to take the medication currently available to slow progression due to terrible side effects. My doctor told me to keep my chin up, hope for a slow progression and plan on a liver transplant in 5-10 years. It’s been 4 years and I’m still doing well, but both my husband and I know things can change anytime. When they do, we will once again go through the grieving process together and hope that the future brings us both new hope in the form of a liver transplant.

Realizing that you are each grieving for the same losses at the same time can help you both find better ways to cope by leaning on each other for support and talking about your feelings to get through the difficulties and sadness together.

 

2) Try to see life from your partners perspective.

If you have a chronic illness, its important for you to realize how frustrating it can be for your partner to see you sick and hurting every day. Know that it’s not easy for them to take on the lion’s share of the workload instead of sharing responsibilities equally. And realize that they may be feeling lonely, hurt and sad too.

If you live with someone who is chronically ill, know that if it was possible to wish away their illness they would, but they are just as frustrated by their limitations as you are. It’s hard to ask for help and embarrassing to have to rely on someone for so many things. And beyond their pain, fatigue and other symptoms, they may be feeling sad, guilty and frustrated too.

I’m very lucky in that my husband is a very caring and understanding man. But that doesn’t mean that my illness has been easy for him. As a matter of fact, my husband will tell you flat out, he hates these diseases and what they do to me. He hates that they make me sick, that they keep me in pain and up nights not able to sleep and that I can’t do all the things I want to do. He hates it and he wants to “fix it” all and he can’t. He can’t make the pain go away. He can’t make me feel less fatigued. He can’t do anything except hold me, tell me he loves me and that he understands my pain. And it frustrates the hell out of him on a daily basis. He hates himself for being frustrated or feeling angry at me because I’m sick and having those feelings inside him causes him even more pain. Being the spouse of someone who is chronically ill is not an enviable position.

Most of you reading this probably know what it’s like to be the one who is chronically ill. But for those who don’t, I’d like to share my side of the story. For me, it’s incredibly hard to be sick and depend on someone for so many things in life. I’ve always been the go to, get it done girl. I shopped. I fixed things in the house. I took care of friends and family when they were sick. I had a career and a home and if there was a will, there was a way for me to get it done. I relied on no one and needed nothing from others. I was a version of my own superwoman. And then RA hit and took all my superpowers away with it. As time passed I had to learn to prioritize. I learned to do little things around the house to keep it clean because once a week cleaning was no longer possible. I had to ask for accommodations at my office so that I could work part time from home due to the rising levels of fatigue and pain. Co-workers thought I was lazy and getting the royal treatment because I didn’t share my disease details with everyone. It was embarrassing, demeaning and I worried about losing my job every day. As the RA progressed I was able to do less and less and to be honest, I’m not sure where I’d be right now if my husband hadn’t come into my life when he did. Over the past year and a half the RA has stripped me of just about everything I could do. I’ve failed medication after medication and it’s eating at every joint in my body. I’ve lost the ability to work. I can’t walk more than a few feet and need a wheelchair if I have to go any further. I can’t sleep on my side  or snuggle with my husband in the normal way couples do. I can’t even clean a few counters in the kitchen without my arm joints flaring up, let alone clean an entire room or the whole house. Some days I can’t turn the door knob or the key to let the dogs out. Having to rely on my husband for damn near everything is embarrassing and depressing. And yes, I hate what this disease has done to me just as much as my husband does. I can’t just decide to get up and work on a project or go out with friends. Everything takes planning and timing depending on whether my body is flaring or I’m having a rare good day. But more than anything, I hate having to see the look on my husband’s face when he sees me in pain and crippled by this disease and there isn’t a damn thing he can do to help me.

So how do we get through it all? Together. Carefully, softly and with a lot of deep conversations about how each other is feeling so that we can understand how the illness affects us both. We’ve found that if you can see life from each others point of view, you can adapt your words and actions to make things a little easier on each other when times are difficult. We use something we call a “safe space” where we can each talk openly about our feelings.

 

3) Make a “safe space” where you can each talk about how you’re feeling without limitations.

It’s hard to share your innermost thoughts, even with the person you care about the most in life. And sometimes it’s really hard to hear what you fear others are thinking. But if you make a “safe space” where each of you can share your feelings openly and honestly, you can address issues between you before they get out of hand.

A “safe space” is a special time when you both sit down and talk about your feelings with each other. It’s a time when you can say whatever you need to openly and out loud without the fear of being criticized or judged. It’s not always easy, sometimes it hurts to hear that someone is frustrated with you. But if you keep and open mind and try not to take things too personally, you can get all those suppressed feelings out in the open. Once they are said, you can work back and forth with each other to resolve the issues between you both.

For me, it was hard to hear how frustrated my husband was with my illness. My first thought when he spoke was that he was frustrated with ME. But as I listened carefully and opened up my heart, I realized he was frustrated by the illness and not with me directly. I needed to hear how much frustration my husband felt from my illness so that I could understand his mood changes and the emotional and physical load that he’s taken on.

He also needed to hear from me how difficult it is to have to rely on him for so many things. He knows know that I wish I could miraculously make myself better, but I can’t. And now that we’ve discussed everything in more detail, I can separate his feelings of “being frustrated with me” to “being frustrated with the diseases” so that I don’t take his moods or actions so personally. I can empathize with him because we’re BOTH frustrated with these diseases and how they affect our lives.

Once you find ways to talk about your problems, you’ll find that it becomes even easier with time. There will be bruised egos or hurt feelings, but if you remember to listen with an open mind and heart and be honest with each other, you CAN find a way to work through the emotions and find a solution that works for you both by meeting in the middle.

 

4) Realize that it takes two to be in a relationship. You BOTH need to be willing to work on your problems together to make your relationship stronger.

Once you find ways to talk openly with each other, it’s important that you both find solutions to the problems by meeting half way in the middle. It takes two people to be in a relationship and it will take both of you to work through the problems and issues that come up as you live your life together. Many issues may revolve around your illness, but our method of “meeting in the middle” works for just about any problem that may come up between you and your partner.

My husband and I came into this marriage both having been married and divorced before. We knew when we met we both came with our own “baggage” into this relationship. And when we end up frustrated with each other, we often realize just how much that “baggage” affects our moods and the way we react to each other. I’ll use a recent example to illustrate the way we try to work through everyday problems.

The other day when we were leaving the house for a doctor appointment, I was surprised there were weeds in the yard given that my husband had recently applied a weed management product. I said, “Wow, we still have weeds! We need to get out here and see if we can get these under control again.” Whatever I said really seem to irk my husband. I wasn’t sure why but it was clear that it bothered him. When we made our “safe space” to discuss the issue, he told me that he was embarrassed by his anger because it seemed like such a small issue. But he was angry at the fact I used the word “we” when I most likely meant “he” needed to fix the weed problem. Part of his reaction came from his previous marriage and how his ex-wife used to ask him to do things, and part of his reaction came from my illness and not being able to do things to help him. I was honest and told him that I really DID mean “we” because I thought I could come out in my chair and help him by spraying the weeds along the sidewalk. But I also admitted that sometimes I say “we” when I really mean I need him to take care of it. So, in order to resolve the issue moving forward, I agreed to try to be more specific and only use “we” when I really meant I could help him. And he said that if I used the word “we” again, he would ask me, “do you think you can actually help me, or do you really just want me to take care of it?” before letting it bother him. It was a silly disagreement, but we were able to address it and “disarm” it before it caused any more problems between us.

We do this anytime we have issues. We try to find a middle ground so that we’re both working to resolve the problem. It’s our “I will try to do this, if you try to that” method. You’ll be amazed at how much easier things are resolved when you both work together to solve a problem instead of expecting the other person to do all the work.

 

5) Be grateful for the things you still have and the activities you can do together.

When you live a life filled with pain, fatigue and illness it’s easy to get caught up in all the bad things and forget the good ones. It’s not easy to be in a relationship when the illness sometimes seems bigger than the two of you combined. There are days filled with tears where you both may just want to cry and hurt together for things that have been lost. But you also need to remember to cheer for the small things you do have left and share the hope that you have deep in your hearts for better days to come.

It’s important to “live for today” and to enjoy the small things in life and share them together. If you and your partner both work together you can find the small strengths and abilities that you still have and make the best of them. Maybe it’s not possible for you both to go running around town together like when you were teenagers, but you can enjoy a quiet dinner together at home or out in a nice restaurant together just as much. The key is to look for the happiness in your life as it is now and not as it used to be or how you hope it might be in the future.

In our household, we have a different “menu” of activities that we do together depending on whether I’m having a good day or a bad day. We find ways to make the best use of what we can do on any particular day. When I’m flaring we find quiet, easy things we can do together like watch movies or TV, order in and have a picnic in the living room, or play games together that make us laugh. When the rare good days come we make time for projects around the house, go see a movie or have a meal out somewhere, or even just take a car ride together and enjoy the time talking. When you adjust your expectations and accept the reality of your situation, it’s much easier to find the joys in the simplest things in life like just being able to hold hands on the couch together while watching TV.

Another thing that we do as a ritual every night in bed just before we turn out the light…we share our “happy moment(s)” for the day with each other. I started this nightly process years ago when I realized that no matter how bad a day you were having, if you looked hard enough there was ALWAYS one moment of happiness. When you stop and think about it you can look back and find that one moment where, if for only a second or two, you forgot about life, stress, problems and pain and felt only joy. It could be the sound of a cat purring next to your ear, a joke someone told you or the look on a loved one’s face when you told them something wonderful. I’ve even had “gastronomically” happy moments where the bite of food I put in my mouth tasted so delicious that everything just disappeared except the flavor of that food on my tongue. There is ALWAYS one! And when you make a habit of looking for them at the end of every day, you’ll start to find more of them in your days. We even label these moments now by declaring right then and there that “THIS is my happy moment for the day!!”

It’s a beautiful ritual to share with someone you love, but it’s also something you can do by yourself. It’s a wonderful feeling to relive those moments at the end of the day right before you nod off to sleep. It’s just one more way to focus on the good things you still have left in your life.

 

6) Make a conscious effort to find ways to show each other that you love and care for one another.

The final tip that I have for all of you is to really make a conscious effort to show your partner that you love and care for them in as many ways as you can every day.

When you live with chronic pain and illness, it’s really difficult to keep the romance and love flowing between the two of you. You may find that it’s difficult to have relations with one another on a regular basis. You may not be able to curl up with your partner on the couch or in bed like you could before you were ill. One of the things I miss most is the way my husband and I used to snuggle in bed together. But with the RA hitting my shoulders and hips so hard, it’s impossible for me to lay on my side for any length of time now. I’ve had to adjust to sleeping only on my back and that makes any snuggling or cuddling very difficult. But we’ve both talked about how important it is to touch and be touched, so we’ve worked around it and found new ways to sleep and snuggle with each other.

We work really hard to keep the love flowing between us in small but meaningful ways during the daytime too. We love holding hands on the couch while we’re watching TV. Whenever my husband helps me up from my chair, we hug and kiss. When we move past each other we make sure to touch an arm or a leg or a buttock to connect, if only for a moment. There are small kisses on the forehead, the top of the head, the back of the neck or the hands that we share with each other. I love wearing his t-shirts as night shirts and he likes to roll over and sleep on my side of the bed with my pillow when I get out of bed early. We may not be able to do everything that normal couples can do, but keeping the love and intimacy active between us is important to keeping our relationship healthy and strong.

Saying “I love you” is just one of many ways to show your partner love. Be creative, have fun with them and make that connection with them as many times per day as possible. You’ll find you both start feeling less alone and closer together than ever before.

 

Now that you’ve had a peek into our relationship and read the details of how we keep our relationship strong and healthy, let’s look at those six tips one more time before we close…

1)      Move through the grieving process(es) together.

2)      Try to see life from your partner’s perspective.

3)      Make a “safe space” where you can each talk about how you’re feeling without limitations.

4)      Realize that it takes two to be in a relationship. You BOTH need to be willing to work on your problems together to make your relationship stronger.

5)      Be grateful for the things you still have and the activities you can do together.

6)      Make a conscious effort to find ways to show each other that you love and care for one another.

 

I hope by sharing our story, you’ve found some comfort in knowing that you are not alone. Like I said before, relationships aren’t easy. And when you add in all the problems of living with a chronic illness too, it’s easy to let the relationship fall into disarray while you both struggle with your emotions and the stress of daily living. But if you are willing to work through the steps with each other to make your relationship strong, you will find that it IS possible to get through the difficult times and live, love, and grow closer together instead of further apart. 


One Response to “Living with Chronic Illness: Six Tips for Keeping Your Relationship Strong”

  1. S E says:

    Thank you. I’m hoping for better days. Both my husband and I have different chronic illnesses. He has bad mornings and I’m wiped out by evening, so it’s very hard to find time to connect.

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