Marriage and Chronic Illness: Communication is Key
Marriage is hard work. I say this as someone with over 12 years of experience. Throw a chronic illness like lupus into the mix – or any chronic illness for that matter – and things can get a little hairy at times. It may sound cliché and you may have heard it a hundred times before, but communication can truly make or break your relationship, especially when one person is dealing with a chronic illness and the other person has taken on the role of not only a spouse but also a caregiver.
Over the years I realized as much as people have told me I am a great communicator – I travel and speak publicly and have worked as a journalist for over a decade – in my relationship when it comes to my illness, this isn’t always the case. And what made this realization a hard pill to swallow is that I didn’t see what was happening for a long time.
Stay with me for a minute.
I started changing the conversation
If you are living with lupus or a myriad of other chronic conditions like I am, it is probably safe for me to assume that you have some extremely difficult days. You might wake up with so much pain and fatigue that even the thought of taking a shower or making food seems like an enormous, unachievable task.
Early on in my relationship, I would share details of how I was feeling to my spouse – even overshare at times. But then I began to hold back, thinking “I don’t want every conversation in our lives to be about lupus,” or "I don’t want it to seem like I am complaining about these ailments all the time." I did this not only in my relationship with my spouse but also with those around me, assuring everyone I was “okay” even though I physically and mentally felt terrible sometimes.
By not communicating how I was really feeling for so many years, I began to feel terribly alone and even bitter at times. And my husband felt like he was left in the dark and didn’t know how to help me or what was going on in my mind. This isn’t an uncommon scenario with chronic illness. Sometimes we can feel so physically and mentally overwhelmed from the symptoms, treatments, side effects, doctor’s visits, pain, and fatigue that we just begin to shut down. But once the communication stops, our relationships – romantic and platonic - can begin to breakdown.
Tips for improving communication
While you can find a million tips and pages of advice online regarding how to improve communication regardless of the type of relationship, here are a few things I learned over the years when it came to matters of chronic illness and your significant other:
Your spouse is not a mind reader (sadly…)
While there will likely be times your other half can just look at you and know something is wrong, they won’t know exactly how we are feeling or what we are going through if we don’t verbally share it. I’ve learned to be very specific about how I am feeling, whether it’s pain I am in or if I have a lupus fever. By being open about how I was really feeling, my husband and I realized two things: Sometimes I just need to share it and get it out in the open in a safe, trusted environment – I don’t necessarily need him to try to “fix” anything. And other times, I need tangible help, which he can assist with now that we have protocols in place (thanks to communication). If I am having severe back pain, he will grab me my ice packs, or if I am having a day with extreme fatigue, he will help me with meal prep, errands, etc. Without this communication, my partner would be left in the dark and I could potentially feel alone in this battle or like a burden.
Share the "why" behind your frustration
On a really bad lupus day, I often deal with severe pain, fatigue, rashes, and irregular heart rhythms. These symptoms can often make me seem quieter than usual, short-tempered, or just distanced or consumed with my thoughts. In addition, I might seem frustrated or aggravated. What I learned over time is that without communicating what I was feeling physically or mentally, my spouse wasn’t sure if I was frustrated with him (which I wasn’t) or because of some other reason. And so, over time, I learned to be honest and open about the days that are really bad and where my frustration was stemming from (the disease and how its symptoms can be relentless).
Being open also made me more cognizant of how I acted and reacted to those around me in my home on the difficult days, knowing that the irritation I was feeling from the disease itself could easily (and mistakenly) come off to others as me being irritated with them.
Be open and honest when it comes to intimacy
Chronic illness can wreak havoc in basically any area of life, and intimacy between two people is no exception. Being in physical pain and dealing with fatigue is one major intimacy killer, as you have little energy and desire to do anything. Side effects from medication, like steroid weight gain, can also have a negative effect on someone’s sex life (and overall self-esteem). Plus, it can be hard to be spontaneous with it comes to intimacy if you have a chronic illness. But even with all of the potential pitfalls, there are many ways to continue the connection with the one you love – and actual sex doesn’t even need to be a part of it.
Setting time aside (with our cell phones down) to cuddle, talk, or watch Netflix in bed just holding each other is one way to feel connected. For some, it is a warm bubble bath with just the two of you (which can also help with sore muscles or pain). Massage is another way to feel connected to one another and can relieve stress and pain in the body. The most important thing is to be honest and open if you are feeling disconnected. In addition, make a list of intimate activities to do with one another that will help keep the spark alive from date night options (on those days you are feeling pretty good) to Netflix or board game nights when you are having a rough day.
Additional advice for couples
Another piece of advice I would share with anyone in a relationship – married or not – is to communicate your appreciation and gratitude often. With chronic illness, spouses tend to also take on the role of caregiver (to various degrees). Being a spouse and a caregiver can be stressful and overwhelming at times. Even if I can’t physically go out with my husband on a date night to thank him or purchase him an expensive gift, a little handwritten note in his lunch bag or card on his side of the nightstand is my way of reminding him of how grateful I am for the things he does for me. I still have a lot to learn in the communication department, but I can say without a doubt that the things I have recognized and put into action have positively helped our relationship. I hope some of my advice resonates with you!
What are some communication tips you have found that have helped strengthen your relationship with your partner? Share them with us below!
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?