Living with someone with chronic illness is one of the most challenging burdens anyone can ever experience. Not only is it emotionally demanding to stay positive when someone you love is hurting physically or emotionally; it is downright heartbreaking when your loved one is unwilling to accept their condition or make positive changes to improving the quality of their lives.
Consider these examples.
Claire is a wife and mother of three small children. She has always been highly motivated to achieve her goals, and excellent at balancing life and family demands. However, life changed for Claire around five years ago, when she was diagnosed with fibromyalgia. Although she tried to work within her energy envelope, she eventually had to quit her job due to unrelenting pain and fatigue. This was very difficult for Claire because her self-esteem partially stemmed from making a “financial contribution” to the family. She felt like a failure and became very depressed. She withdrew from her family and stopped doing the things she loved. Although her husband tried hard to remain positive and upbeat, he started feeling anger, resentment, and guilt because he had the challenging task of keeping the family life as balanced as possible. He soon reached his breaking point from the pressure to meet the medical and financial needs of everyone, which put a huge strain on his and Claire’s marriage.
Nancy, on the other hand, is married to Charles and, like Claire, she was diagnosed around five years ago with fibromyalgia. Nancy’s pain is severe and she can no longer work outside the house but helps her kids with homework, completes small housekeeping tasks, makes meals and paints beautiful pictures of flowers. Nancy works with the ebbs and flows of her illness and realizes that she can’t do everything. Charles and Nancy do what they can to take care of their three children and live a happy life. Although Nancy has chronic pain and experiences flare-ups without warning, they make adjustments. When they plan a picnic and Nancy doesn’t feel up to it, they move the picnic indoors and play board games. Their family is a well-oiled machine and Charles is never made to feel like a burden, nor does he withdraw from his responsibilities. Instead, he steps up to the plate and their marriage flourishes.
Living with someone with chronic illness is extremely difficult. Some people accept their limitations, while others tune out so they don’t have to handle life’s realities. Some make accommodations to their new situation; others give up. Be that as it may, no one is at fault when someone is plagued with a chronic condition.
As a partner of someone with an illness, it’s normal to feel hurt, confused, disappointed and angry while still adjusting to the challenge at hand. It’s also normal to feel extremely overwhelmed and somewhat resentful for having to change your life and your plans to assist your spouse. However, it is not okay when the person you love takes out their frustrations on you.
Here are some tips to make the process easier.
- Acknowledge the pain and loss you’re experiencing. Yes, you have a right to feel negative emotions. In some instances, you may lose the support of your family and friends. People may talk about you and your spouse behind your back. They may think negatively of you and your spouse. They may abandon you altogether. Although you have every reason to feel these negative emotions, it is important that you remain strong. Acknowledge your pain but concentrate on joy. Feel the pain and frustration of being a caregiver but focus on the positive. It’s OK to reflect on the past but you can’t wallow in it. Yes, you may long for the healthy partner but you have to accept that things are different now. Things can still be incredible, though! And yes, it may take some (or a lot) of adjustment time but things will improve.
- Support your spouse. Yes, they may have good and bad days and this can be taxing. However, abandoning them is never the answer. Running away from the situation will not solve anything. In fact, your decision to divorce, have an affair, or send the person with the illness to a facility will not only cause your spouse extreme pain, but it will haunt you for the rest of your life. Stay because you love and are committed to your relationship.
- Get the support you need. Take mini-breaks from the situation and do things that you enjoy. There is nothing wrong with spending time with friends or family members who understand. There are numerous support groups for spouses living with someone with chronic illness – find one and attend regular meetings. Seek a support group that will enable you to share your feelings, promote personal growth, and learn to communicate effectively. Find a group that you merge with – one that gets you and inspires you to pursue your dreams rather than delaying them. This group should encourage you to vent about your challenges and inspire you to share your triumphs too.
- Spend time together. Spend quality time with your spouse. Ask them about their condition and ask to assist them. Realize that they are doing the best they can under the circumstances and reassure them that you are there to help. Although their illness may have changed how much activity they can do, they are still the person you fell in love with. Suggest date nights or short trips to revitalize the relationship. Being in a new environment could revive your relationship.
- Keep communications open. Don’t shut out your spouse – and don’t let them shut you out either. Communicate with them and let them know how you’re feeling. Acknowledge your feelings and be empathetic toward theirs.
- Develop an action plan. Work collaboratively to divvy up the tasks so that everyone has something to do. Shared responsibility is one way to bond and make the person with the chronic illness feel useful and needed. Keep in mind their limitations, and work within their energy envelope.
- Change your attitude. Instead of viewing your life as living with someone with chronic illness, consider it a golden opportunity to serve the one you love without expecting anything in return. Now that’s the stuff great love stories are made of!
In conclusion, loving someone with a chronic illness is tough but it can be done. By acknowledging the pain, supporting your spouse, getting the support you need, spending time together, communicating openly, and developing an action plan, you can watch your relationship flourish!