It seems like I am often reading posts from members who talk about spouses or partners who aren’t very supportive of them, who deny their condition, belittle them for having symptoms, criticize their medical regimen, and otherwise seem to deny them the support that they need during this time of need. What’s it been like for you?
The traditional wedding vows include the promise to take care of each other “in sickness and in health.” Even in the best of times, the challenges of daily life can present result in some dips and detours along the road, requiring some patience (or a lot of patience) and the willingness to make some unexpected adjustments and compromises. With some hard work and commitment, couples often find a way to keep going.
Life can throw some real curveballs. Chronic health conditions are one of them.
I have worked with a lot of couples who are facing this challenge, with conditions like diabetes, lupus, HIV, cancer, MS, chronic pain, and others. What I have learned is that each couple deals with it in their own way, some struggle more than others. To be honest, some get through it, and even grow closer. Some don’t.
While one of the partners receives the diagnosis, in many ways, both receive it. I probably don’t need to say this to you or explain why. Changes in activity levels, emotional reactions, diet and lifestyle management, medical regimens, paying for treatment… and other challenges.
In one way or another, life is never going to be quite the same. And it may be drastically different.
My idealistic side would like to assume that when one partner receives the diagnosis, the other will step up to the plate, jump in an do whatever has to be done to be a real support from the moment the diagnosis is received, and going forward from there. In sickness and in health…
But it’s not that simple. This is real life and not a movie. And real human beings are involved.
There are a lot of reasons why partners can’t always step in and step up to the plate.
“Why me?” becomes “Why us?” Just as the person receiving the diagnosis questions the fairness of the diagnosis, their partners have the same question. There isn’t an answer to this question, but it’s still human nature to ask it.
Sometimes it is simple denial. They can’t and won’t believe that their loved one has really received this diagnosis. It wasn’t the way they thought that life together would be like. And, at least for awhile, pretending like it isn’t there, or will go away if they ignore it long enough, can be a relief, though not a very long-lasting one.
Partners often feel helpless to “fix” the situation, and so they either react all over the place and try to micro-manage their partner’s life, or they don’t do anything and, instead, ignore the needs of their partner or even criticize them and tell them to “get over it.” I am not sure which reaction is more destructive to the relationship, but individuals facing medical diagnoses express a lot more distress and sadness when it seems that their partners have run for the hills or become their critic when they most need them.
The individual with the diagnosis may be experiencing fear, and their partner may be as well. Along with the fear factor can come a lot of scary images about the future, and what this mean both for each individual as well as for the relationship. Both partners may be reluctant to talk about fear because they don’t want to scare the other person. But fear can also go unrecognized, and be turned into denial. Lack of real information can play a role here. When we don’t know the facts our minds have a way of making them up.
I can say with optimism that, while a chronic condition can really throw a relationship off track, it’s possible to get it back on track, and even move to a new level of commitment and support. Here are some ideas to consider:
You are a couple, but you are still individuals. Each member of the partnership may need some time to deal with their own reactions to the diagnosis, to get a handle on their own emotions, their fear, frustration, anger, sadness, disappointment. It can be helpful to talk to an objective friend, or a mental health professional, to sort out these reactions and feelings, and get a perspective on them.
Get educated. Again, sometimes each individual needs to go off on their own and get informed. Or, this can be a joint project, including some information-gathering and talking to healthcare professionals. The best antidote for fear and helplessness is real information.
Chronic conditions result in a lot of elephants wandering around, and they take up a lot of space. Fear and helplessness are among the biggest. The best way to deal with an elephant is to talk about it, for each person to share what’s going on with them, their questions, their fears, their hopes. Communication makes the elephants shrink and wander away.
Remember that support goes both ways. Each member of the partnership has their own needs. The individual facing the chronic condition may need to spell out what they need, both on a practical level as well as emotionally. While it may seem like it should be obvious to the other person, it may not be. And it may be up to the patient to reach out and encourage their partner to talk about how they are feeling. And of course, this goes both ways. The best way to help a partner facing a chronic condition is to ask them what he/she needs and how you can best help them. Just like you need reassurance, your partner may need some too.
When partners can’t or won’t be supportive…
Let’s be honest. As you’re read in other posts, not everybody can step up and pitch in when their partner is facing a chronic condition. As a patient, you may come to the point where you can no longer tell yourself that your partner ‘just needs time” or is “using tough love” to help motivate you. Lack of support from a partner is lack of support, plain and simple.
Place your own self-care first. Sure, your partner may figure things out over time and be able to be a real team member on the road ahead. But in the absence of that, reach out for support where you can get it. Connect with friends and family members who can be there for you. This might mean getting a little support here, and a little support there, and piecing together what you need. Know who you can call upon and for what. It’s not ideal but it’s taking care of yourself.
Build up your support network with others who are facing your condition. Nobody gets what you are going through more than they do. Consider local support groups if they are available in your area. And of course stay in touch with your friends here.
Don’t let yourself be made to feel less than for having a medical diagnosis, or that you are lazy, or trying to get attention, or that you are somehow responsible for feeling the way that you do. In other words, don’t turn lack of support against yourself. Refuse to take on someone else’s negative attitude toward your condition, or to feel guilty for having a chronic condition.
Do what you can to deal with your own emotions and to build yourself up. Have a safe place to talk about how you feel – you may want to consider talking to a mental health professional. Do activities you enjoy, and that you can participate in. You might even ask your partner to join you. You might also want to consider building more spirituality into your life: look upward!
Work closely with your healthcare team. Take responsibility for taking the best care of yourself possible. Power up!
What has the journey been like with your partner? A smooth start? A rocky start? Are you traveling it alone at this point? Any stories to share? Any advice?
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