Living With a Chronically Ill Spouse: What to Expect and What You Can Do To Help
February 18th, 2018
There are a number of resources out there for living with chronic pain, and for good reason. The majority of the attention should always be given to the people actually in pain. They’re the ones who have to schedule their life around their pain, and they’re the ones who have to find treatments to make their pain more bearable. To upstage that with sympathy pains is just disrespectful.
But living with someone with chronic pain can be a pain unto itself. It’s hard to watch someone you love suffer. Friends and family always find themselves wanting to do more, while simultaneously afraid that anything they do might make it worse. If you’re close to someone with chronic pain, you might try to take responsibility for them, putting all your energy into helping them. It’s a difficult balance to achieve:
supportful while not neglecting your own self-care, encouraging without being dismissive.
The best thing you can do to help your loved one with chronic pain is to understand, as best you can, their condition and how it affects them.
What is Chronic Pain?
Simply put, chronic pain is any pain lasting for longer than 12 weeks.1 This pain may be as a result of a previous injury or surgery, nerve damage, pain from a related condition like arthritis or fibromyalgia, or even stress. In a previous blog [link when available], we discussed the characteristics of chronic pain. This is a very chronic condition, so much so that in 2012, 11.2% of American adults claimed they had experienced pain every day for the past three months.2 It occurs most commonly, though not exclusively, in older adults and more frequently in women than men.
Fortunately, there are treatments that have proven effective. Physical therapy, chiropractic care, and gentle exercise work for some, while others might need steroid shots. Some chronic pain patients found that changing their diet or adding dietary supplements reduced their chronic pain. The most effective treatment depends on the individual and their pain, so it’s best for your loved one with chronic pain to speak to a specialist for the best results.3
What to Expect When Living With Someone With Chronic Pain
Your loved one with chronic pain will have good days and bad days. If their pain is constant, good days will be the days when the pain is minimal. If they experience their pain in flares, they may even have periods of time in which they feel no pain at all. The bad days will be days when the pain flares up. There are a few ways for patients with chronic pain to predict a flare coming on. Often it starts slowly with tingling or unidentifiable discomfort. Occasional shooting pains may occur and the flare builds from there.
Because their life is so dictated by their pain level, often when living with someone with chronic pain, your home life might also be dictated by their pain level. It’s important to be prepared for not just the physical symptoms of your loved one’s chronic pain but the emotional symptoms.
- Depression or loss of energy. In the midst of a bad flare, your loved one isn’t going to feel particularly motivated to get up and move around the house. They may feel defeated or hopeless in the throes of their chronic pain, leading to a deep depression. They may not be interested in the things that they typically enjoy during this time.
- Irritability. It’s difficult to be the picture of temperance when struggling with chronic pain. Most of us can be a little short-tempered when in pain, so imagine how your nerves might feel after 3 or more months of pain. Sometimes patients with chronic pain take out their frustration on the person nearest, usually the person living with them. It’s important to remember that it’s not personal and to not try to retaliate.
- Low sex drive. It may be an awkward subject, but it’s important if you’re romantically involved with someone who has chronic pain. And in many ways, it’s a no-brainer. It’s hard to get in the mood when all you can think about is your pain.
- Anxiety. People with chronic pain may be constantly anxious or worried that they’re missing out. There’s a certain stigma against chronic pain, that pain is something which can you can overcome if only you’re tough enough.4 Because of this, many patients with chronic pain become frustrated with themselves for not being strong enough to overcome their pain.
Chronic pain can put a stressful weight on relationships. For the chronic pain patient, chronic pain can be isolating. They may feel that no one understands what they’re feeling or that no one sympathizes. They may also feel that they’re a burden to their loved ones. For those living with someone with chronic pain, it can be difficult to see your loved one hurting. You may feel frustrated on their behalf or you may feel overwhelmed with the added responsibilities that you have to take care of while your loved one battles their chronic pain. When you share expenses, the cost of medical bills can be an added stressor.
A study in 2009 published in Pain also showed that patients sometimes “catastrophize” or allow their negative feelings to magnify their perception of chronic pain, if they felt they didn’t receive adequate support from their partner.5 However, this was a vicious cycle because the more the pain was magnified, the more support the spouse felt they needed.
Patients with chronic pain can feel helpless, and those living with someone with chronic pain may feel helpless to help them. But there are ways that you can offer emotional support to your loved one with chronic pain.
What You Can Do to Help
The most important thing to keep in mind when living with someone with chronic pain is to be patient with them. This is not to say that you should hang your head while they hurl abuses at you or that you should do everything with them, but remember that this pain for them is a constant part of their life. It’s natural that it might trip them up and slow them down. If your loved one with chronic pain is having a bad day, don’t hover over them but make sure that they know you’re there to help by making lunch, picking the kids up from school, or just playing their favorite movie. If they’re willing to talk about what they’re feeling, listen to them. If not, do what you can to distract them from their pain.
It is difficult for patients with chronic pain to keep up with their responsibilities on a bad day, even when those responsibilities are chronic pain treatments like regular exercise. Nevertheless, this is important for them and neglecting their self-care will only exacerbate their pain. Gently nudge them to do a little bit every day and encourage them when they do, but be careful not to push them too far or they might withdraw.
Communication is key. Ask your loved one with chronic pain how they’re feeling (never assume, especially not in cases in which they seem irritable). Ask them what you can do to help or support them. Even if it’s awkward, make sure you talk about how their chronic pain might be affecting their sexuality. You want to be a safe person for them to be open with. When your loved one with chronic pain talks to you about something related to their chronic pain, don’t make it about yourself.
When it’s your turn to express your side of things, try to be tactful. Patients with chronic pain are already prone to feeling like they’re a burden to those around them, and talking about how much pain you’re in because of their pain may only confirm that in their mind. However, don’t neglect your own self-care. If you feel overwhelmed, admit that you need to take a step back. Do something that refreshes you, and make sure that in your caring for the other person, you still eat balanced meals and get a healthy amount of sleep. This is for their sake as well as your own. If you spiral into a negative mindset, you won’t be much help to pull them out of their negative mindset.
It may feel that what you do to help your loved one with chronic pain doesn’t make a difference, but it does. Knowing that someone cares enough about them to support them through their bad days can shine a light through the deep feeling of isolation that patients with chronic pain often experience. In fact, a study published in Arthritis & Rheumatism in 2004 showed that fibromyalgia patients showed less pain sensitivity when a loved one was in the room with them.6
Keep doing what you’re doing and keep listening to what they need from you (while not neglecting what you need from yourself). You may just be the rock that gets them through this trying time.REFERENCES:
1Chronic Pain: Symptoms, Diagnosis, & Treatment - Medline Plus
2Chronic Pain: In Depth - National Center for Complementary and Integrative Health
3What is Chronic Pain? - OnHealth
4The Emotional and Psychological Impacts of Chronic Pain - Ausmed
5Perceived Entitlement to Pain-Related Support and Pain Catastrophizing: Associations with Perceived and Observed Support
6Influence of Social Support and Emotional Context on Pain Processing and Magnetic Brain Responses in Fibromyalgia