This is not a topic that can be covered in one post, so I will do my best to list some key points and elaborate on them one at a time. Here are some pointers that have helped us.
1. Give your partner room to grieve. Your partner may not always do or say the right thing or the compassionate thing. It is important to remember that he or she is grieving too. It is far harder to watch someone you love suffer than it is to suffer yourself. Be patient with them in this process. Remember the grieving stages and give them space to grieve in their own way.
If you feel attacked in their grieving process, the following responses can be helpful: "I know it is hard to believe this is happening." "I remember wishing there were something that could make this all go away. Everyone is trying so hard to get me to try different things. I wish it would go away too." "It is okay that you are angry. You have lost the person with whom you used to do recreational things; I just need to know that you are not angry with me but with the symptoms." "Are you sad we cannot ........?" If this does not work, set a boundary and be very clear: "I understand that you are grieving; it is not okay to blame me or to take it out on me."
Validate your partner's feelings and needs. They matter just as much as yours do. Remember that anger is a normal part of grieving. It is okay to set boundaries, to let them know it is not okay to take that anger out on you, but being angry in an of itself simply means they love you and are grieving. Acknowledge that it is hard on them to see you suffer. Show appreciation for all the extra effort they have to do as they compensate for the family not functioning at the same level. A simple "Thank you for the time you spent on grocery shopping today" goes a very long way in keeping a relationship strong. Remember, they are very tired and need support as well.
Once they are in the acceptance stage, then it is okay to problem solve: "Let's try some recreational activities that do not require as much physical stamina from me. How about ........?" Yes, you as a family WILL come to the point where you find your new normal. Have faith that stability will come, but in that journey, be patient with your loved one. Empathy and patience go a very long way in a relationship.
We have found the following activities draw us closer and add fun to our relationship: reading together, watching movies together, trying new restaurants, getting a cane or a wheelchair so we can visit places we have not been, walking, finding silly goals like seeing who can make the cheapest but healthiest meal, listening to podcasts together, playing board games or cards, and most importantly, sharing our feelings.
Feelings, that is the hardest one, right? If you and your partner are going to support each other, you as the disabled partner are going to have to eliminate the belief that you are defective as a person. You are NOT the problem. The symptoms are the problem. Eventually, the symptoms are no longer even the problem. We recently traveled, and we recognized how relaxed and laid back we were. My husband and I were not stressed about getting to the next sight seeing event because the goal was to enjoy each other's company and the company of those we were visiting. We had hit the acceptance stage where we could actually find the good that comes out of my chronic health issues. No one wants to be stressed on vacation, but most people are. My health has taught our marriage to live in the moment and to focus on relationships. What a blessing my illness was on that trip!
Understand your partner's grief by communicating empathy and boundaries, giving your partner patience, and finding new leisure activities you can both enjoy together. This is in my opinion the most important part of having a successful intimate relationship when you live with chronic illness.
Other tips that help that we will elaborate on in the future are:
2. Try your best to move beyond survival mode/plan fun.
3. Don't give up your sex life.
4. Write out new goals for the future.
5. Cut corners with functional tasks so there is more time for relationships.
6. Pray or meditate together.
7. Choose minimalism as a way of life/don't try to keep up with the Jones.
8. Express gratitude to each other.
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