Love and Chronic Illness: How to be There for your Partner

A chronic illness diagnosis doesn’t only affect the person experiencing the illness – it can also change the life of the person they are in a relationship with, as well as the dynamics of the relationship itself. 

Chronic illness will test the vow ‘in sickness and in health

Medical blog Mighty asked their readers with chronic illness’ to share the highs and lows of being in a relationship while chronically ill. Their answers are honest and raw. This is what they had to say:

“Chronic illness will test the vow ‘in sickness and in health’ and can either make or break a relationship. To grow despite the burden of chronic illness takes nurturing each other even when the care seems lopsided.” — Danielle Myers

“Being in a relationship while suffering from chronic illnesses really shows how much that person cares. Even in friendships. With chronic illnesses, it is hard to plan ahead and follow through on plans, even if you really want to do it. You never know when you will have a bad day or when a good day will go bad. It takes a special person to truly understand and be OK with how unpredictable we may be.” — Erin Ann

“I wish people knew plans cannot always be kept. My illness does not care if you have made dinner reservations or planned a weekend away — it will still flair up!” — Patricia Chamberlain

“Patience is so important. You both have to learn how to manage this thing together. Try to always be open about what you are actually going through, so your partner understands the real you.” — Jessica Kelley Moye

“The hard part is when you talk to your significant other about what symptoms you’re having and they think you’re joking with them. Taking the time to really educate yourself as a partner is critical for understanding.” — Nikky Lynch

 

When dating someone with a chronic illness, don’t expect perfection

Kerry J Heckman was diagnosed with chronic Lyme disease in 2016. She writes about where the journey has taken her.  “I was diagnosed with my first autoimmune disease shortly after my husband, Zach, and I got married,” she revealed in an articles from 2016.  “We’ve been married almost ten years, and I’ve been more or less sick the entire time. There was a time when Zach had very little patience with me and my ever changing symptoms.” However, that soon changed at her first appointment.  “Something shifted after he came with me to my first appointment with my Lyme specialist. He developed patience with me. He started to listen more, and sit with me while we talked through my symptoms. Slowly we became partners in fighting Lyme.”

Heckmen shared advice on how to be a good partner to someone with chronic illness.

Being there

Heckmen understands how her sponatneous crying could be frustrating for Zach. “At first he tries to walk away and then I see the thought process going on in his mind as he slowly turns around sits down next to me,” she writes.  “My crying fits only last a couple of minutes, then I take a few deep breaths and gather myself. Just sitting with someone while they are breaking down is one of the most powerful things you can do, and you don’t even have to say a word.”

Stand up for her

“My husband lives with me every day, while my friends see me only occasionally. He knows the truth about my illness, which I often hide from others. It makes me feel so supported when he speaks up about my illness to my friends and family. I get sick of defending myself and it’s nice that he is willing to take over.”

Trust her, all the time

“People with invisible illnesses, often feel just that, invisible. When we tell our coworkers we are in pain, but we don’t look like we’re in pain, we’re afraid they don’t believe us. A partner can be the one person with whom we don’t have to worry about being ourselves. Don’t second guess, don’t minimize, just believe.”

However, don’t expect perfection. “Know that this is a hard road that no one asked for, including your partner. Express gratitude, even for the tiniest things that make your life easier.”

Listen, ask questions

“Talking things out is how people process thoughts and emotions. Lyme has been described as a do-it-yourself disease. There is no standard treatment, so we have to make decisions about our treatment protocol, our diet, and our exercise regimen without much guidance. There are a lot of other things to process with chronic illness. We sometimes wonder why this is happening to us or if we’ll ever get better. Sometimes we don’t have “a point” or are not particularly good at making sense, but it helps just to talk.”

Support the diet and lifestyle changes

“There have been many times during this journey I have felt like a burden. Our money is spent on treatments rather than nights out, I have a strict bedtime of ten o’clock. I do not have the stamina to go to parties. But we still make an effort to make things fun, like cooking together, watching comedies to laugh together, and choosing low key events we both can enjoy.”

Healing

Heckman writes that in 2016 her husband gave her the greatest gift he could ever have given her. “He suggested I leave my job and take a part-time job. It’s allowed me the space to start the healing process.”

“Maybe allowing your partner to quit his or her job isn’t possible in your situation. Think about what else you can do to allow your partner space to heal. Can you put the kids to bed while he or she takes a bath? Can you help sort and pay the flood of medical bills? Can you give up a corner of your office for a meditation space? Any little bit helps.”

Every relationship has value

In 1996, my first love  was having unknown chronic pain that the doctors had no name for. After we broke up, the doctors diagnosed her with Multiple Sclerosis. We didn’t break up due to her MS, we broke up for other reasons. However, at times, it seemed we’d break up due to her illness.

While she was going through her battle in the dark with this mysterious sickness in black, I went through all the emotions; Anger, frustration, sadness, fear. She was a headstrong, passionate, emotional wreck. We’d be on the phone at night having a causal conversation, when suddenly, she’d just burst into tears. Heartbreaking to hear. We lived a block away from each other. There were many nights that her pain got so bad, I had to run over to her house. We’d sit in her backyard all night, just hugging.

At the tender age of 17, going through this turmoil with her, I learned valuable lessons about relationships.

I learned that I wasn’t her everything. Being someone’s everything is just a lousy lyric that pop songs brainwash us with . No one can be everything to anyone. Make relationships outside the relationship, or the relationship isn’t going to work anymore. (Read that again if it doesn’t make sense on the first read. It will, trust me)

Fight the good fight

Another thing I learned while with her is to take care of myself. She’s the one that was going through the pains however, I forgot to take care of myself. Self abandonment is easy when caught up with a loved ones health problems. I started to cancel nights out with friends,  started to skip classes to rush over to her school. I was putting myself last. I thought I was being a super supportive boyfriend. And yes, at times, I needed to put my life  on the back burner. I didn’t need to do it all the time. When I remembered to take care of myself, I discovered how to create a loving, truly supportive relationship with her. And that’s when I believe I started to be there for her – when I was at my 100%

We fought a lot.  Our fights got loud and heated. I found later that our fights were fueled by desperation, pain and stress. Our fights never made sense. One time we had a two hour bar brawl in my living room over which pan we’ll use to pop popcorn. Yes, really. The fight ended with us not talking to each other for a couple of hours, watching a movie in silence – sans popcorn.   The most important thing I learned from being with her is that at the end of the day, we were fighting the same fight. I learned to share my feelings with her, and to tell her I was also feeling her pains. Instead of fighting with each other, we started to battle it together.

 

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