Married to a person with PCD – a brutally honest interview

Chronic disease and relationships – can they go together? For the blog, we talked to people living with chronic illness and their partners. In today’s instalment of this series, we are talking to Miriam Weiboldt. She and her husband, who has primary ciliary dyskinesia (PCD), have been together for over 25 years.

PARI Blog: Mrs Weiboldt, how did you learn about your husband’s chronic illness?

Miriam Weiboldt: I was only 17 years old when I met Sven. He looked like an athlete and had a well-toned physique. But I quickly noticed that he had respiratory problems. For instance, when he rode his bike to my house after work he was often extremely out of breath and exhausted. He also had to deal with more frequent and more severe infections than other people. He was always coughing a lot, would spike fevers, was laid low, and had to have operations on is nose. At that point Sven didn’t know that he had PCD, but it was clear he had health issues. Back then, I didn’t really give it much thought though because I was pretty young. When you’re young, you don’t worry about things so much.

PARI Blog: When did you start to be concerned about your husband’s health?

Miriam Weiboldt: The more my husband’s health deteriorated, the more I worried, of course. It was the most difficult when we were trying to get an accurate diagnosis. He had tons of tests done. The lung function test had a really poor result. MRSA was detected in his sputum and in a smear. He was finally diagnosed with PCD. It was a rough time. We both cried because were so worried about what would happen down the line in terms of my husband’s health. As a young woman it was easy for me to be more casual about the infections. Now that I am older and we have the PCD diagnosis, it is harder for me. When his lungs act up again, I worry. How much longer will they hang on? What will happen when he’s older? Will he need a lung transplant? I worry about it.

PARI Blog: Is your husband’s disease a strain on you and your relationship?

Miriam Weiboldt: When we were young, the disease didn’t put a strain on the relationship. But about ten years ago it started to be a burden. My husband’s lung function and general health deteriorated, making it so we were no longer able to do some things together, like go to concerts, which were very taxing for Sven. Furthermore, with large groups of people there is always a risk of infection for him, something he needs to avoid at all costs. Because of his compromised lung function, he became more and more limited in what he could do. We used to ride bikes together a lot, but we were suddenly no longer able to do that. We can only go for walks on flat terrain because he no longer can manage going up hill when hiking in the mountains. We gave up camping, which we loved, because of the less than hygienic conditions, the temperatures in the tent and camper, and roughing it negatively impacted Sven’s health. We avoid campfires or festivities involving open fire, like the Easter bonfires we have here, because the smoke is too irritating to Sven’s lungs. Before we visit family or go to parties, we ask if everyone is healthy first. If anyone has a cough or cold, we stay away so Sven doesn’t get an infection.

PARI Blog: That sounds pretty stressful. Why do you opt to be in a relationship with a chronically ill person?

Miriam Weiboldt: (laughs) Because I love my Sveni! No matter what he is my Sveni. I would never trade him in! I would marry him all over again. We found each other and everything works. We have the same sense of humour, we laugh a lot, we think alike. In our group of friends we are the couple who has been together the longest. A lot of our friends are divorced. We, on the other hand, are happy together.

PARI Blog: Why do you think you have a happy relationship despite your partner’s disease? What do you think is the reason for this?

Miriam Weiboldt: I think we enjoy each moment much more than other couples do. If you are sick or live with a sick person, you experience many moments more intensely and you appreciate it when you can have a good time together. Sveni was my first and only boyfriend. Sometimes we don’t even need to say anything because we know exactly what to expect. We are very close because we have been through thick and thin together. It takes a whole lot to get us out of sync. And in that way we have it a lot better than a lot of healthy people, I think. We enjoy more, we are closer and that is pretty awesome. That is why I say without any hesitation that I would marry Sven all over again.

PARI Blog: Nevertheless, the chronic disease and the associated limitations are a reality. How do you deal with it on a day-to-day basis?

Miriam Weiboldt: You adjust, you get used to it. You have to be flexible and think outside the box to find solutions and to adjust to new situations all the time. Now Sven rides an E-bike and I ride a conventional bike. This way we can do our shared hobby together again. Instead of hiking in the mountains, we do geocaching, rediscovering places and nature in the process. Of course there are some things we just can’t do because there is no alternative. For example, when I feel like I’m getting a cold, we will refrain from kissing and sleep in separate beds until I am healthy again. I don’t want to infect Sven. In the end, I just want for him to stay healthy. If I get really sick, then Sven wars a face mask to be safe.

PARI Blog: Is the chronic illness a frequent source of conflict? Do you fight more often than couples who are both healthy?

Miriam Weiboldt: I don’t think we fight more than other couples. The only time we have conflict because of his illness is when I feel that Sven should do more for his health and I tell him that. Recent example: I try to suggest that he eat a more healthful diet and make sure he is getting the right vitamins. Sven doesn’t like that much. There are times when he lets his inhalation routine slide a bit. Then I nag him to do the treatment and he reacts sensitively to that. I try to support him because I want him to be as healthy as possible for as long as possible. After all, I want spend our golden years together. (laughs)

PARI Blog: You just mentioned the subject of inhalation. How does inhalation and treatment affect your daily life as a couple?

Miriam Weiboldt: Sven does his inhalation treatment at morning and at night. It’s a part of our daily routine. Initially it was an adjustment because we used to take our dog Attila for a walk every morning. We can’t do this any more because Sven has to do his inhalation therapy then. Now I walk Atti alone. By the time I get back he is finished with his inhalation therapy and we start our workday. In the evening he often does his inhalation therapy while we are watching television. I actually like the inhalation therapy because I can see that it helps him. He used to have chills and fevers that would last for two days. Every once and while he would get a bad infection. Since he began regular inhalation therapy this has gotten a lot better. Sven no longer gets chills and fevers since he started doing the inhalation therapy. This is why I am actually happy that he now has something which he can do for his health and well-being.

PARI Blog: If you had to give advice to another woman who was thinking of marrying a man with a chronic illness, what would you say to her?

Miriam Weiboldt: I have quite a few things I would say.

1. When you are in a relationship with a chronically ill person, it is important not to forget about your needs. You need to continue to do the things that you enjoy even if the other person can’t do it with you. For us this mostly means parties, concerts and events. I haven’t given up these things. I go to concerts or trade fairs or other public events with friends, even if Sven stays home.

2. You have to get used to the fact that it won’t be easy. It will be a life that has a lot of ups and downs. You need patience and strength. On the one hand, you need mental strength because there are more health problems and more worries than with a healthy partner. On the other hand, I also mean strength in the literal sense. I do things that are stereotypically considered a man’s job, like carrying heavy shopping bags. I do this at the times Sven does not have the stamina for it.

3. You need to find a way to deal with the worries and fears. Exercising helps me cope with this a lot. When I exercise all out, afterward things don’t seem half as bad.

4. Talking is good, but talking too much is bad. You should do everything you can to avoid having the illness dominate the conversation and to be a never-ending topic. It is understandable that the sick partner will want to talk about it when he is fully occupied by it. But at a certain point it makes sense for the partner to talk to someone else about it, someone outside of the relationship, a psychologist.

Being in a relationship with someone with a chronic illness means there will be limitations, but in exchange you get other things – more enjoyment and awareness of the moment, more intimacy and closeness, always making the best of any situation. This is why I would never shy away from a relationship with a person with a chronic illness. As I’ve said, I would marry him all over again.

PARI Blog: Mrs Weiboldt, thank you for this candid interview.

Note: The statements made in the interview are the individual views of the interviewee. They do not necessarily reflect the PARI view or the general state of science.

An article written by the PARI BLOG editorial team.

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