Tuesday, 12. May 2020
How do people manage to feel like they have fulfilling relationships day in and day out? Especially if your partner has a chronic disease? It’s totally doable! We talked to happy couples with one healthy partner and one partner who has a chronic respiratory disease. They talked to us about why their relationships are happy and offered some advice.
“If you are starting a relationship with a person who is chronically ill, you have to be prepared for fact that it won’t be easy. It will be a life with a lot of ups and downs. You will need patience and strength. Mental strength because there will be more health issues and more worry than with a healthy partner. But also strength in the literal sense. Sometimes I do chores that are stereotypically considered a man’s job, like carrying heavy shopping bags. I do this because my husband does not have the stamina for it. 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. Talking is good, but talking too much is bad. You should do everything you can to avoid having the illness dominate the conversation and become a never-ending topic.
Being in a relationship with someone with a chronic illness means there will be limitations, but in return 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 Sven all over again. We are happy. Some couples we know where both partners are healthy have separated. We are still together and plan to be for many years to come.”
“Before you get into a relationship with a person who is chronically ill, you should really think about whether you are willing to go down this path. Life with a person who is chronically ill at your side is different. There are limitations to what a person with a chronic illness can do. I am not saying that people with chronic illness are not lovable, but it is not a normal life in the traditional sense. Healthy partners should be aware of this. Otherwise the relationship would be a waste of time. A waste of time overall, but mostly for the person with the illness and who likely has a shorter life expectancy – because they might have been able to find someone else in that time. If you have decided to be in a such a relationship, your motto should be: Enjoy your marriage, your time together and your love to the fullest. You never know when your health will deteriorate, so it is important to live in the moment.”
Sven Weiboldt, has primary ciliary dyskinesia (PCD) and has been in a happy relationship with his partner for more than 20 years.
“When your partner is sick, keep focused on the good days, and enjoy them. If you let the bad days dominate, you can get into a cycle of self-pity. It is important to consciously detach yourselves from the accomplishment mindset and to have other measures of success, especially for your partner. Even if this is difficult having been socialised in a society that values certain types of accomplishments, it is important not to judge people solely based on what they can do and achieve, but on their nature and character. I advise healthy people to do this too because the ability to perform can be taken away, for example by an accident, illness or job loss. Therefore it is important to value different things.
In our relationship it is sometimes hard when my husband isn’t doing well. Then we both worry and are overwhelmed by the situation. When we are in this mental space, we sometimes blame each other. Sometimes my husband says that I have no idea what it’s like for him when he can’t breathe. Then I respond that he has no idea what it’s like to have to drive your husband to the hospital for the thousandth time and to have to explain this difficult situation to the kids. The feeling of not being understood, the worry and the pressure cloud one’s view. We forget that we are actually a good team. Such conflicts get resolved on their own once my husband is doing better again or we consciously try to put ourselves in the other’s shoes. We always try to remember that it is the situation that disappoints us, not our partner.”
“Basically there are no guarantees in life: health, love, relationship – these are special things and there are no guarantees. Everyone should keep this in mind, regardless of whether they are healthy or chronically ill. From the point of view of a chronically ill person, I feel it is very important for you consider yourself to be lovable despite the illness to have a functioning, happy relationship. You should not have the feeling that you are less worthy because your have an incurable illness. That is an erroneous belief and you shouldn’t fall into this trap. I also had these thoughts before I met my wife. I thought that she should have the best and with my disease I couldn’t be that. You have to distance yourself from thoughts like these. It is also important that you talk openly with one another without inhibitions. That is especially true for men. Men often view chronic illness as a physical weakness that a man must not have because he belongs to the presumed stronger sex. Open communication and openly dealing with the disease in that the partner for example also goes with you to the doctor and sees what works and what doesn’t, health-wise, helps with this.
If healthy people are trying to decide whether or not to be with someone who is sick, then they should ask themselves: Do I love this person? If yes, then go for it! Talk to your parents, best friends and confidants before the wedding, so you’re really sure. If your chosen partner is chronically ill, the discussions and deliberations might take somewhat longer. But illness should not be a barrier to love. Once a healthy young woman wrote me that her parents had advised her against marrying a man with cystic fibrosis, saying she would be ruining her life. And to this I say: Parents also need to give their child the freedom to decide for themselves when it comes to love. Should people stop loving someone because the person is sick? True love is something very special. Nothing is set in stone – neither health nor life expectancy. When I first went to primary school, everyone assumed that I would die soon and would not make it to adulthood. I am still alive. Three of my former classmates, all of whom were healthy, have since died.”
Most people have probably wondered what the secret of a happy relationship is. It is clear that it takes hard work and effort to make a relationship a happy one. And if one partner has a chronic lung disease, the relationship will be following a different script anyway which will have its own set of hurdles. People should know what they are.
1. Live your marriage, your time together and your love deeply, because you never know when the sick (or even healthy) partner’s health will change.
2. Always be aware that there is no fundamental guarantee of health, love or a happy relationship. These are all very special things, regardless of whether one is healthy or has a chronic illness.
3. Love yourself and feel worthy of love, just as you are (even if you have a chronic illness).
4. Speak openly and without inhibitions to each other – about the illness too. What is possible, what is not? Get on the same page by both partners going to some of the doctor’s appointments. This helps the healthy partner have a better understanding of the sick partner’s situation. And it can relieve sick partners of the burden of always having to tell their partners what they are not able to do for health reasons.
5. But don’t let the illness become a never-ending topic of discussion. If conversations start to become repetitive or become a burden, get psychological help, especially the partner who is stuck in a negative loop.
6. Don’t let your lives revolve around the disease; do not let your lives be dominated by the disease.
7. Be understanding and considerate of each other – as equitably as possible.
8. Don’t forget yourself! Healthy partners should be aware that there is also life separate from the disease. The sick partner should remember not to do too much and compromise their health to keep up with the healthy partner and to be able to resist their presumed demands.
9. Do things without your partner, too, and give your partner the freedom to do the same.
10. Keep your focus on the good days and don’t give as much credence to the negative parts.
11. Make a conscious effort to distance yourself from societal pressure to perform and set other measures of success. Accomplishments are not the be all and end all and this is particularly true for the chronically ill partner.
Note: The statements made in the interview are the individual views of the interviewees. They do not necessarily reflect the PARI view or the general state of science.
An article written by the PARI BLOG editorial team.