REAL PEOPLE, REAL STORIES

Kathy Lemenu and Her Wife Diane on MG, Marriage and Communication

Kathy and her wife, Diane, were caring for their baby daughter when Kathy was first diagnosed with MG. Surrounded by loving family and friends in Detroit, MI, this couple adjusted to their new reality with open and honest talks. MG United spoke with Kathy and Diane on how they’ve changed the way they communicate in the face of MG.

Kathy, your MG worsened gradually. When did it become real for you?

Kathy: As a nurse, I worked mostly in obstetrics. It's a pretty physical department to work in. You're active and have to react quickly to changing situations. But I was having more and more difficulty doing things that weren't a problem before. I hadn’t been diagnosed yet, so I figured it was just age. I didn't even really question it. I thought, “Well, sucks to be me.”

But after I was diagnosed, when my sister and I were shopping, I started getting very short of breath and I could barely move. I felt very strange. So we went to the hospital right away. I think being in the hospital was kind of a turning point for Diane too, that this mysterious illness became a real thing with consequences. It was kind of a blessing because it wasn’t a severe hospitalization and I was released pretty quickly. But we got the point about how serious MG can be.

Did you find that being a nurse helped you be a strong self-advocate in the doctor’s office?

Kathy: Actually, no. I'm pretty good at advocating for other people, but not for myself. I guess I’d rather not think about MG too much and just go out and live my life. But Diane is totally different. She wants the details. She wants all the answers that I never bother to get.

For example, my doctor told me recently, “You are at stasis, you are at your baseline. My meds, my tricks, aren't going to get you any better than this.” So I figured, well, okay. And I went home and told that to Diane and she said, “No, that's not good enough.” She wants us to get a second opinion. So we're going to.

What challenges has MG placed on your relationship?

Kathy: From the time I got diagnosed until now, I’ve had this terrible fatigue. Diane would say, “The doctor said you shouldn't be tired.” I know she was probably thinking, “Get out there and do the dishes.” She’d ask if this was something I could power through. That doesn't feel good. The misconceptions about fatigue in MG really sets up problems for couples.

Diane: Before she was diagnosed, I couldn't understand why she was so tired. I was confused and sometimes I would get frustrated by it. I think back on that time and I think, well, she probably had MG symptoms long before she was diagnosed and I had just assumed that she just didn't want to get out of bed, didn't want to feed the baby. MG is one of those conditions where you can't really see clearly what the effects are. So we started getting smarter about how to communicate. I had to develop a lot more empathy.

How has the way you communicate changed since Kathy’s MG diagnosis?

Kathy: It's a good thing that she and I like to talk things over. We're like a dog with a bone and we just get in there and talk, talk, talk, talk until we can figure things out for ourselves. It's been difficult for me because I'm older than Diane and fighting stereotypes of age. So sometimes I work harder at hiding it. But you can’t hide it at home every day.

Diane: Kathy doesn't want to put the burden of not feeling well on the family, but it's super important for her to tell me. For her to say, “I don't feel well,” when she doesn’t want to talk about it is really brave. And when I need help, I know I can ask, “How can you help me in a way that won't create more fatigue for you?” We really have to be smart about the division of labor. For example, Kathy is really good at talking and reading with our 12-year-old. She can be present for our daughter without exerting a lot of energy. That's a valuable thing that Kathy brings that doesn't knock her out.

What advice do you have for other couples trying to talk about MG?

Kathy: It takes such a burden off of me when people understand the fatigue and make it easier for me to live life the way I need to, when they don’t try to convince me to do things I can’t or make me feel like I am losing out on something.

Diane: We’ve developed this thing we call ‘kind confession.’ It’s where we give each other permission to voice difficult feelings to each other, as long as we do it in a compassionate way. With kind confession, I don’t have to just silently have these feelings. I can say things out loud like, “I'm feeling sad that you can't go to this event with me.” And Kathy can admit when she’s not feeling well and really wants me to go and have a good time without her.

With kindness, you can discuss sensitive subjects, like household chores, without fighting or silent resentment. Caregivers deserve to be able to ask for things from their partners who have MG, even though they might worry it’s going to be too much. You can have faith that your partner is a grown person and can say no. You don’t have to assume that they can’t do things. It's okay to ask.

If you trust yourself and your partner, you can get to those vulnerable feelings behind the frustration. You can take the blame out of it. MG can be the bad guy instead of the person who has it or the person who loves them.

We still have our struggles. I don’t always remember these things when I'm really tapped out. Sometimes I react like a wife, not like a psychologist. But we can talk about everything. That's one of the best things about our relationship.

SHARE YOUR MG STORY WITH US

Every person living with MG has a story that may help others in similar situations. We’d like to hear yours.

Tell us about your experience.

Would you be willing to be featured in an MG United member story?

SHARE YOUR MG STORY WITH US

Get the latest MG updates, resources, MG-friendly recipes, ideas on how to track symptoms, stories about people living with and managing MG, seasonal tips and much more delivered to your inbox!

*indicates required field

Which of these goals is most important to you or the person you know who has myasthenia gravis?*

I authorize argenx US, Inc. ("argenx"), its affiliates and companies working with argenx to use my contact information and health information (“Information”) to contact me by direct mail, email, telephone and autodialed text message for marketing purposes, such as to provide me with information, offers and promotions regarding myasthenia gravis, argenx products and programs, to conduct market research or surveys, and to use my Information to develop future products, services and programs.
I understand that I may withdraw my authorization provided above by emailing [email protected] or following the unsubscribe instructions on the communication. Unless I withdraw this authorization, it will remain effective for 2 years. Copies of this authorization may be obtained by emailing [email protected]

Thank you, !

If you have a minute, please tell us a little more about yourself.

Sharing this information will help us provide you with the most relevant MG updates, resources and information based on where you are in your MG journey and where you live in the country.

Filling out this information is optional and not required to receive MG United updates. You have already signed up for MG United.

Which of these things best describes you?

Thank you, again.

We'll make sure we share content most relevant to you.

Sign up for MG United!

Get personalized content and support for wherever you are in your journey with MG. Just enter your email, and you're in.

YOU MAY ALSO LIKE

Want more great content? Follow MG United on social media.

MG United Facebook MG United Instagram MG United Pinterest MG United YouTube