Coping Through the Emotional Journey of Having A Chronically Ill Spouse
Marriage and partnership is full of many ups and downs, and those moments can feel more intense when married to a chronically ill spouse. It puts the commitment “for better or worse” into a different perspective. Let’s talk about how to cope with some common emotions that come up when married to a chronically ill spouse.
Denial and Shock When First Diagnosed
What do you remember thinking or feeling when your spouse/partner was first diagnosed? If you’re like many people, the initial emotions you face are shock or denial that it’s actually happening.
My husband recalled feeling like “the bottom fell out from under” him when he learned that I have Multiple Sclerosis in 2019. He at the time didn’t know much about the condition and was shocked that this type of diagnosis was something we were dealing with. He was used to hearing me dealing with the occasional headache and fatigue, but he never imagined that what was happening was an autoimmune disorder that would never go away (and would gradually worsen over time).
Denial comes in the form of acting as if the diagnosis hasn’t been made and continuing on with life as you did before receiving the news. Avoiding conversations about your spouse’s condition, refusing to attend their medical appointments or saying things like, “it’s going to get better,” “it can’t be that bad,” or “the doctors got it all wrong” are key signs of denial.
The Moment When Reality Sets In
Every spouse will have a reality shifting moment when you realize that what’s happening is real. Sometimes the reality shift happens when your spouse’s condition changes major parts of who they are and how they live life (i.e., mobility issues, requiring more assistance with life tasks, needing to take medical leave or discontinue working, needing more hospital stays or doctor appointments).
Hearing the news is one thing. Seeing it play out in your life is another hill to climb.
Up until that point of diagnosis, my condition was mostly invisible, so he didn’t physically see the symptoms firsthand. I was still working, taking care of our 12 month old daughter and carrying on with life as normal.
The moment that my husband faced reality head on was when he accompanied me to my initial steroid infusion treatment to stop my MS flare up. I was in a large room with several other people receiving IV infusion treatment.
I remember seeing his face drop and eyes fill up with tears when he walked in and saw me hooked up to the machine. He was so used to seeing me be “strong” and seemingly invincible, but instead in the moment I was weak, vulnerable and scared. This was the very moment that he realized our lives would be changing moving forward.
Was there a defining moment after your spouse’s diagnosis that made reality set in for you?
Feeling Worried About Your Chronically Ill Spouse
Many people recall feeling terrified and worried after their spouse/partner was diagnosed with a chronic condition. Your worries naturally come from a fear of the unknown and wanting them to be okay. These feelings are often met with questions like: “Are they going to die?” “Is there anything I can do to help?” “What does this mean about our future?”
You may even find yourself thinking through worst case scenarios of what you think will happen with your spouse’s condition. This response is often because of internal panic or your attempt to prepare yourself for whatever comes up later.
The worry you feel for your chronically ill spouse’s health and wellbeing is normal and also hard to deal with at times. The anxiety begins to affect you if not worked through (i.e., changes in eating and sleeping habits, feeling sick to your stomach, experiencing headaches, muscle tension and change of mood). At the end of the day, you want your spouse to be okay and “get better,” but the reality that their health condition is permanent often leaves you worrying about them every day, even after their flare up subsides and you adjust to your new norm.
Try these tips to help relieve those worries:
- Ask your spouse’s medical doctor questions to get answers. This can be done by attending an appointment with your chronically ill spouse and writing questions down on this chronic illness checklist. Getting information from your spouse’s doctor prepares you to adjust to life with a chronic illness with less worries.
- Take slow deep breaths. Deep breathing increases your oxygen and blood flow, relaxes muscle tension and clears your mind. Sometimes you will need to slow down while other things seem to be moving quickly (out of your control). The breathing serves as a reset for your mind and body so that you are better able to handle the other things going on.
- Focus on one thing at a time. Anxiety leads to racing thoughts and feeling overwhelmed. Allow yourself time to focus on one thing at a time without the pressure to multitask, because it help to reduce stress and accomplish things more effectively, including supporting your spouse.
- Talk with your spouse about how they are feeling. Communication allows you to confirm what your spouse is experiencing rather than wrongly assuming and making them feel guilty (which can happen with the best of intentions sometimes). Confirm how your spouse is feeling to best meet their needs and relieve stress for the both of you.
Frustration and Helplessness as You Try Supporting Your Chronically Ill Spouse
It’s difficult witnessing your spouse/partner dealing with a condition that has no cure. The reality that you can’t fix it or make it go away can leave you feeling frustrated with yourself, a higher power and even your spouse sometimes. Many spouses and partners confirm feeling helpless because symptoms and flares can still happen when they’re making the necessary adjustments, being a supportive spouse and “doing all the right things.”
These feelings often come up when your spouse is having a flare up, experiencing new symptoms, unsuccessful medications and treatments or prolonged discomfort. Illness uncertainty brings frustration and helplessness back up when you least expect it.
Resentment Towards Your Chronically Ill Spouse
Have there been times when your spouse’s needs came before your own? How many of your life plans changed as a result of your spouse’s health needs?
When was the last time you had to cancel vacations, gatherings or other important events to support your chronically ill spouse? Do you have a social life anymore?
I know I asked some big questions there. But they’re all things that affect your life when married to a chronically ill spouse.
Unexpected and big life changes often have to be made when married to someone with a chronic illness. And not everyone feels warm and fuzzy when these realities happen. If not careful, feelings of sadness turns into anger, and resentment can start to brew toward your spouse.
Here’s why resentment is so common when supporting a chronically ill spouse. Resentment comes from a place of blaming the other person for things happening in your life outside of your control. Are you showing any of these signs of resentment in your marriage with your chronically ill spouse?
If so, don’t beat yourself up. In fact, this is a moment to be gentle with yourself. Now that you are aware of what is happening, you and your spouse can intentionally work together to grow closer with more understanding of how the situation is impacting your marriage.
Moving forward, here are some ways to cope with feelings of resentment.
- Remind yourself that your chronically ill spouse does not want to make these life changes either. You’re going through all of these changes together – not alone.
- Do what is within your control. Focusing on things out of your control leads to more anger, resentment, helplessness, depression and worries. Prioritize your time and energy on things that are doable and bring meaning to your life. These activities bring on other feelings (i.e., joy, excitement, gratitude, happiness, relief and peace).
- Talk with your spouse about how you feel. Learning to talk about the chronic illness rather than letting your feelings build up allows both you and your spouse to meet your needs together.
Experiencing Grief When Married to a Chronically Ill Spouse
Usually when people think about grief, the loss of a loved one is the main thing that comes to mind. While true, it’s important to know that the stages of grief are related to any loss, including many losses that can happen when married to a chronically ill spouse.
Here are a few examples of losses that can happen when married to a chronically ill spouse:
- Declining health for you and your spouse
- Changes in you or your spouse’s mental health
- Poor life satisfaction
- Financial instability
- Hopelessness
- Unemployment
- Unaccomplished dreams/goals
- Strained or failed relationships
- Lack of independence
If you are experiencing any of these life losses relating to your chronically ill spouse’s health, it is very likely that you are grieving.
One loss is hard enough to experience, but living through multiple losses over a span of time takes an emotional toll on you and your marriage. In fact, many marriages end in divorce due to the high stress that comes with grieving all of these losses with a chronic illness.
Understanding this, please know that you have every right to feel the way that you do. Many things about your life and your spouse are either changing now or will change later, and that can be scary.
Coping with Your Grief
- Make a list of things you still have right now – big and small. Briefly refocus your thoughts at the beginning or end of your day to boost your mood and notice the meaningful things that can otherwise be overlooked. The goal is to give your mind a gentle refresh as you work through your losses.
- Relive cherished experiences. Allow yourself to reflect on how things were before life changed by looking at photographs, talking through memories with others and feeling all of the emotions that come up. Although it is hard reminding yourself of what isn’t possible right now, those memories are still here for you to enjoy.
- Allow yourself to grieve without judging yourself. The first stage of chronic illness grief is shock/denial for a reason. You are either in disbelief that your spouse received the diagnosis or not acknowledging what’s happening. Ignoring what you feel only makes the process harder for you and your chronically ill spouse long-term. They need you to work towards accepting what is happening so that you can support them. Recognizing how you feel allows you to meet your needs, too.
- Speak with a Chronic Illness Therapist or grief counselor. Your feelings about their health condition a lot to handle by yourself, and there are things that are best to not share immediately with your chronically ill spouse. Therapy helps you explore your grief with privacy and gives you next steps to move forward.
- Seek help from your community. Remember that you are not in this alone. Reach out to other supports within your community (i.e., family, friends, clergy) to deal with the chronic illness grief you’re experiencing. Supportive community takes some of the load off of you, promotes safety and provides relief. There is no shame in asking for help.
Final Tips to Cope with The Hard Emotions
- Learn ways to help your spouse with managing their condition. This can include learning how to use or administer health equipment, medications or providing assistance with day to day activities as needed.
- Take time to learn about their health diagnosis. Knowing what you’re dealing with can help you set realistic expectations, understand treatment options and come to terms with what’s happening sooner than later.
- Keep a list of your spouse’s medical team and corresponding contact information in case you need to communicate on their behalf
- Confirm with your spouse how to respond in health emergencies. Set up an advance directive to boost your confidence and worry less about what to do.
- Join/participate in groups for those with chronically ill spouses or loved ones. You’ll hear firsthand experiences and gain a community of people that understand the complicated feelings you have.
- Reserve some time to rest or have some quiet time. Prioritizing time for yourself helps you keep going and cope with the emotional toll of your spouse’s health condition more successfully.
Next Steps for Support When Married to a Chronically Ill Spouse
I help individuals and families who are living with chronic illnesses and the emotional toll that it can bring. We can talk through your personal experiences of being married to a chronically ill spouse. Whether you’d rather participate alone, as a family or through group therapy, these services are available for you today.
Although you cannot control your spouse’s illness, you can still find ways to cope with your feelings and work through your grief – helping you to feel more prepared. I’d be happy to support you on your journey.
Schedule your first appointment with me by booking a free 15-minute consultation call.
