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10 Tips for Navigating Relationships With a Chronic Illness

Before I begin this piece on relationships, I’d like to say that you do not need to be in a relationship. Tip #1 is always to love yourself, be fiercely independent and believe in the power of you.

I wasn’t properly diagnosed until I was 22. When I met my boyfriend Brian at age 20, I was in one of my better months; my health seemed more under control than it had been in a while. I was confident all of my symptoms were caused by a digestive disorder, and would easily be fixed with a proper diagnosis and good GI healthcare. Aside from the constant bathroom struggles I could never seem to escape, the first three months of my relationship with Brian were bliss. Then something in my body changed. I began to lose my footing when I walked, started falling down randomly. Passing out drenched in sweat. Waking up to a world constantly spinning. Sobbing in pain because even laying my head on the pillow hurt. I soon found myself bedridden and barely able to walk. Brian held my hand through all of it, for eight long months of terrifying days and painful nights.

When I was finally diagnosed with Ehlers-Danlos syndrome (EDS), mast cell activation disorder (MCAD), postural orthostatic tachycardia syndrome (POTS) and gastroparesis all in the same week during my first visit to the Mayo Clinic, I was shocked. I didn’t know what the prognosis of all of these illnesses would look like, and let’s just say Wikipedia wasn’t helping me feel too confident about it. I was scared, I was grieving and I was (mistakenly) sure that my life was over.

And so, the night I was diagnosed, I turned to Brian and told him to leave me. He didn’t sign up for this and he certainly didn’t deserve the burden. But Brian just smiled. “Oh please,” he told me, “This is nothing. Look at _____’s girlfriend, now she’s got problems! Talk about high maintenance, I could never handle her.” And that was the end of the discussion.

The conversation was short, but Brian’s message that day stuck with me. Everyone has baggage. Mine was just a little more unique, but Brian was all in. Every relationship takes work and comes with challenges – and when one or both partners have a chronic illness, there are certainly some very unique challenges – but with those challenges come some unique and quite beautiful rewards. Today I’m sharing 10 tips I’ve learned along the way for navigating relationships when you have a chronic illness.

1. Love yourself, be fiercely independent and believe in the power of you.

2. Be resilient. I once had a full body tremor and then passed out in the middle of a friend’s birthday party. Brian calmly woke me up and gave me my medicine. I looked up, humiliated, as everyone at the party stared down at me lying on the floor. Brian smiled and shouted, “How about we get some pizzas in this joint!” Everybody laughed, a few of the guys even cheered and we went back to the party. The pizzas were ordered and arrived within the hour. Any time I have an episode like this, or even a long flare-up for days or weeks at a time, the minute I am OK again, Brian treats me as such. He doesn’t pity me or treat me as fragile. We never dwell on what has happened, and neither of us let the bad times keep us from the good. We always pick up and start again where we left off.

3. Never skip date night. Once a week, Brian and I have a date night. Whether that means going to Disneyland to see the fireworks because I’m feeling good, watching our favorite TV show in bed because I’m having a flare-up, or playing card games in my hospital bed, we always have date night. And during those set hours, we try to take some space from any medical or serious talk. We focus on enjoying each other in the moment, and just have fun with whatever we are doing.

4. Know your own worth. Because of my illnesses, I have always struggled with feeling unworthy of relationships. For so long in my relationship with Brian, I felt I was holding him back from a better life. But when I finally spoke to Brian about this worry, he explained I did not hold him back because of my illnesses. Instead, my personality actually pushed him out of his comfort zone and freed him to try new things.

Remember that you have something unique and special to offer your partner no one else can, and that is why he or she is with you. Recognize that something, or many things rather, and know their value. You are so much more than an illness.

5. Establish balance and boundaries. Because I got so sick early on in our relationship, Brian unintentionally developed a caretaker role, and I the role of patient. Over time, instead of asking how his day was when he came home from class, I found myself asking for a water bottle and some dinner. Instead of spending my time with him watching shows or laughing about his day, I would talk to him only about my doctor appointments and ask him to run errands all evening. Brian, in turn, stopped placing boundaries around his own needs and enjoyments. He stopped asking me how my day went or what good things had happened, and only asked me how I was feeling. While there is nothing wrong with taking care of your loved one as much as you can when they are sick, we were forgetting about our relationship beyond my illness. We were missing out on the enjoyment of each other as friends, partners and individuals.

A few years ago we recognized what was happening and we decided to take a step back and re-establish the boundaries around caretaking in our relationship. We now make sure that there is plenty of balance between our focus on healthcare and other parts of our lives. If I am not feeling well and Brian comes home from an event, I first ask him to tell me about his night and then he asks me what he could do to help me feel better. We do things like date night once a week. Brian sets better boundaries on his own needs so he doesn’t neglect himself to take care of me. And best of all, we have created a dynamic that feels like a true partnership, in which I also take care of Brian in areas of life where I am stronger.

6. Be independent. I never rely on Brian for my own happiness. That is on me. When I am sick, I do not allow Brian to be my whole world. I find books to read, movies to enjoy, articles to write, and research to do. I find projects to keep myself entertained and moving forward with my own successes. I do not wait for Brian to come home, or force him to stay home with me all the time. If there is a social event I’m not feeling well enough to go to, I push Brian out the door and make him go enjoy it for the both of us, even when he fights to stay in with me. I think this is healthier for both him and I, and it keeps our friends happy while I’m sick. Besides, what’s the fun in being together 24/7? I’d much rather he go out and come back with a story to tell, then have us both locked in my bedroom all weekend. And when Brian is stuck at work and I’m feeling well, he encourages me to go out anyway and have fun.

7. Good communication is invaluable. Every morning when I wake up, I establish with Brian how I am feeling. If I am feeling good and excited for the day, I let him know. If I have a migraine, but I am still up for a small outing, I tell him so. If I am feeling really sick, but I have a lot I have to get done, I explain that today is going to be a little stressful for me. You get the picture. Chronic pain and chronic illness can vary drastically from day to day, so in order for you and your partner to have the best days possible, it can really help both of you to keep each other in the loop on how you are feeling and establish a tone for the day. Once this is established, however, try to move on to other things. Don’t dwell on how you feel, but instead use this communication as a positive tool for moving forward with the day on the same page. Communication about healthcare decisions is also important.

8. Have faith in yourself and each other. One of the greatest things Brian has taught me in our relationship, and in life, is to have more faith. Faith in time, faith in healthcare and faith in each other. I am a worrywart – I always have been. I worry about my health, I worry about my career and I worry about Brian’s health and his career. I worry about our happiness and our future constantly. But Brian doesn’t worry. He just knows if we keep moving forward and working hard, things will work out. He has faith in my approach to my healthcare, faith in me to make the best decisions for my body and faith in the long-term effects of the time I put in to getting the best doctors and treatments possible. I, in turn, have learned to have faith in him and in us. If I spend my life worrying, I’ll miss out on a whole lot of beautiful things. And having a chronic illness can give you endless reasons to worry if you let it. So can lying in bed for long periods. I have to let go of unnecessary worry, and have faith in myself and in Brian, so that we can enjoy our life together.

9. Leave your guilt at the door. I still struggle with this one every day, but it’s getting better and better. It is easy to feel guilty when you have a chronic illness – heck, it’s practically the number one side effect to feel like a burden. But when you feel this way, check back with tip #4 and remember your worth. Remember that your partner is with you for a good reason. You add a light to their life that provides them something unique, and that is why they chose you. They are not with you by force or out of pity. They are with you because you make them happy in a way no one else can. Never think because you have an illness your partner is better off without you. There is far more to a person than their physical capability, and there are other superpowers you hold in your spirit that surpass any physical limitations you might have. Ask yourself what strengths you bring to the relationship, and never forget those in times of guilt or insecurity.

10. See the beauty in what you’ve gained. Yes, those of us with chronic illness, and our loved ones, are forced to face difficult realities and even pain that our peers could only imagine. This can be a great blessing. We are forced early on to learn what really matters, and it wakes us up to appreciate the beauty in the world most people miss. In a world where everyone is half-asleep, racing to the finish line and trying desperately to keep up with the rich kids of Instagram, we are wide awake. We have the ability to slow down and focus on each other and the moments that really matter along the way. We have the knowledge to fight less and laugh more. I may not ever be able to give Brian his own children, but I sure as hell can build one beautiful life with him, and fill it with the laughter of children we choose and love deeply. Do not dwell on the what-ifs or the things you may have lost. Focus instead on the beauty you have gained, and embrace it.

With great love,

Jessica Kendall James

This post originally appeared on Our New Healthy.

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