- How Chronic Pain Affects Relationships
- I focused on changing myself rather than ‘fixing’ my husband’s health
- Your Spouse Has Chronic Pain? Here Are 26 Ways to Support Them.
- 8 Ways You and Your Partner can Deal with Chronic Pain and Illness
- How to Keep Your Marriage Healthy When One of You Is in Pain
- 6 Ways to Be a Friend to a Friend Living With Chronic Pain
- Ten Tips For Communicating With A Person Suffering From Chronic Pain
- How to Support Someone With Chronic Pain
- Ask how they’re feeling
- Avoid giving health advice
- Be understanding and accommodating
- Ask how you can help
- Learn more:
- Caring for someone with chronic pain
- Continue to treat them as a person
- Look after yourself
- Relationship Stressors
- Changing Roles
- The Effects of Relationship Discord
- A Multimodal Solution
- Effects You Might Notice in Your Loved Ones and Relationship
- Professional Help
How Chronic Pain Affects Relationships
Chronic pain has a ripple effect — not only does it disrupt your life and force you to manage pain, it also changes your personal relationships. Interactions with your spouse, children, family, and friends alter in ways both large and small due to the physical limitations and emotional strain that come from living with chronic pain.
Part of pain management involves accepting these changes and using them to form better and closer relationships with the ones you love. By learning to better cope, you will be able to manage pain and keep friends and family close.
Living With Chronic Pain: Maintaining Relationships
The effect chronic pain has on your relationships depends in large part on the amount of pain you are in, as well as how you relate to each person in your life:
- Your spouse. Partners of those undergoing chronic pain management face incredible challenges of their own. Intimate relations with a spouse can be difficult, depending on the source and intensity of the pain. A spouse may also have to take on more household and parenting responsibilities as the person living with chronic pain becomes less able to function. Money worries due to hospital bills and decreased income can place additional stress on the relationship.
- Children. It can be upsetting for young children to see a parent in chronic pain. They may be confused about what’s going on, and anxious because their future seems very uncertain. They may also feel anger that you’re not as available as you once were, or guilt if they assume they did something to cause your pain.
- Family and friends. People living with chronic pain often withdraw from relationships outside their immediate family, which can lead to estrangement from other family members and friends. Attempts to reach out might be rebuffed if the person is experiencing a pain flare-up or has suffered a decrease in self-esteem as a result of the illness.
Living With Chronic Pain: Staying Connected
Coping strategies that can help people living with chronic pain stay close to their loved ones include:
- Find a communication balance. The people in your life need to know how you are feeling. Staying silent will only cause them to feel estranged from you. On the other hand, sharing too much can cause them to feel overwhelmed, helpless, or depressed. Try to find the right balance. Keep in mind that it will be different for each person in your life.
- Discuss your sexuality with your spouse. Chronic pain does not preclude lovemaking, but it can mean that more planning is required. Make plans for encounters that fit into your medication schedule and the ebb and flow of your daily pain. Don’t be afraid to experiment with new positions for lovemaking if your favorite position now causes too much pain.
- Avoid canceling plans with friends. Don’t let chronic pain keep you from interacting with friends. Canceling plans can be disappointing for all concerned, so if you can manage some level of activity with your pain, you should.
- Take on manageable household responsibilities. If you find yourself unable to perform certain chores that were once your responsibility, replace them with new tasks that you are able to perform. This will keep you an active and contributing member of your family.
- Ask for help. Giving your loved ones a chance to help you in some way can make them feel closer to you. Often they want to help out, but aren’t sure how to offer for fear of offending you. If you’re having trouble with an activity or chore, ask them to lend a hand.
Dealing with chronic pain can be frustrating, but communicating and staying close to your loved ones will help you cope with daily living.
I focused on changing myself rather than ‘fixing’ my husband’s health
It was the beginning of 2013 and my husband and I hit rock bottom. Once again, another medication did not work. This was the 10th medication in 10 years my husband tried to relieve his chronic pain. He was depressed, angry, and began to talk about divorce. I was about to throw in the towel as well because I was experiencing caregiver burnout.
I felt isolated, unsupported, and depressed. I was so angry and felt desperate to find a community that understood. I turned to the internet to find any support, guidance, or advice for someone like me. I found nothing. Yup. Nothing that I could relate to. Nothing I could say, “yeah, this person gets me.” Further, because my husband didn’t even have a diagnosis for his chronic illness, I did not know what support forum to join.
Another issue I ran into was that every website for caregivers was for older caregivers. Every site I found or resource that was recommended was for an aging population. I was 30 at this time and not even close to the end of my life (although it sure felt like it).
I was angry at my life path. While all my friends in their 20s and 30s got to have involved husbands as fathers, go to brunch with their boyfriends, hang out with friends as young people should, here I was: locked in a marriage with a disabled, chronically ill person. Something had to change . . . and the only thing I could change was me.
I decided to take self-care and self-development seriously. I found success by experimenting with different approaches, including life/career coaching, keeping active, adhering to a schedule, meditation, and a self-built AMAZING support system. There are plenty of days that I feel overwhelmed—but instead of letting that feeling take over, I’ve learned to keep going no matter what life throws at me and have fun in spite of it all. I’ve had tons of help, especially from my amazing circle of friends and family.
Once I decided to focus on changing myself rather than on “fixing” my husband’s health, my husband started to respond better to me as a caregiver and pulled through the depression to keep going on the search for answers. Today we have a diagnosis and are still on the search together to find the right balance for managing the chronic pain.
A year later, I feel positive and upbeat more often than not. That’s a success I worked hard to earn, and I’ve learned a lot along the way about maintaining my individuality while balancing my relationship with a person whose needs are more pressing at this time. I am not just a primary caregiver. I am a young, funny, passionate, generous, and ambitious woman. I’m here to share what I know with you, in a space where caregivers can share their successes, so that others can learn to be a Primary Ally too.
Your Spouse Has Chronic Pain? Here Are 26 Ways to Support Them.
If you have a partner, spouse or loved one in your life with chronic pain, it can be difficult to understand exactly what they’re going through unless you’ve experienced it yourself. They likely require a lot more downtime at home than you to rest, heal and manage the pain, and may not feel up to going out very often. Chronic pain can also inhibit a person’s ability to work, accomplish household chores or even do everyday things such as showering and eating.
If one person is chronically ill but the other is healthy, this can put strain on even the strongest of relationships. Although it may be harder to put yourself in the other’s shoes or find a balance in which you both feel like equal partners in the relationship, it is certainly not impossible – and for many couples, facing obstacles together such as chronic pain can actually strengthen their bond and deepen their love for one another.
We asked our Mighty community to share ways the partner or spouse of a person with chronic pain can help and support them. Some of these gestures may seem small, but they can have a huge impact.
Here’s what our community shared with us:
1. “Believe your spouse. If they’re having a bad day, believe them. Don’t try to force them to move or do things they say they aren’t up to doing. And always defend them when the need arises. Even if it’s against family.” – Jessie L.S.
2. “Simple: big hugs. And recognizing that a day on the sofa snuggling your partner can be incredibly healing.” – Heather T.
3. “Being there to listen to me vent and cry when I hurt and reassuring me that I’m not a burden. Hold my hair back when I throw up, help me shower, make sure I eat and stay hydrated. Rub my back (if I don’t hurt too bad). Be there for me any way I need, and don’t stop loving me.” – Kaitlyn Y.
4. “Sometimes just go at my pace along with me.” – Jo J.
5. “We are moving soon and I made it very clear that my body won’t be able to withstand the physical exertion and that we’d need to hire some movers. He looked at me and said, ‘Don’t worry, babe. I got you. You can sit there and be in charge with your feet up.’” – Victoria P.
6. “Be patient with them. Listen. Read about their condition and try to gain a better understanding of where they’re coming from. Remind them that you love them unconditionally.” – Ami C.
7. “My husband and I have a motto: ‘We’re in this together.’ With that in mind, he does his very best to listen and understand my situation, and vice versa. Anytime I get overwhelmed, he’s quick to ask what he can do, even if it’s just a hug or to wipe my tears.” – Alihanra G.
8. “Listen without trying to fix. It’s probably the hardest thing to do as a loved one.” – Cindy S.F.
9. “Communication is key. Ask before you do. ‘Honey, do you want help with this?’ And for the person with chronic pain, ask for help when you need it, no one is a mind reader… Especially if your pain varies and your physical abilities vary from one day to the next. Do what you can for yourself, and ask for help when you need it. Let your spouse/partner help you, allow them to be there for you in that way. This is one way they can share the burden.” – Rebecca M.
10. “Helping massage any sore areas is always a lovely gesture because it can honestly make such a huge difference.” – Amy L.
11. “One of the things my husband does that I super appreciate is helping with grocery shopping (especially bringing the food back) and making supper most days. Cooking, especially supper, can take ages and a lot of effort, so it’s super helpful that he does so much of it.” – Sheila V.
12. “Listen, empathize. Just listen and don’t try to fix what you can’t. Try to understand as best you can, even when you can’t possibly.” – Meemaw J.
13. “I suffer from brain fog and memory loss as a result of my chronic illness. It’s important to me that my spouse attend my doctor appointments to be my extra brain or an extra pair of ears.” – Lindsay G.
14. “My husband does so much for me, I’m so blessed. So the one thing I tell him often is to remember to take time for himself, too. So often caregivers go beyond the call of duty that they forget they have needs, too.” – Brandi J.
15. “Praise the small victories. ‘I only did one load of dishes.’ ‘That’s awesome, love! You are a rockstar! I appreciate you so much. I know that wasn’t easy. Sit down and rest now.’” – Priscilla G.
16. “Let them rest. Sometimes I just have to sleep, and allowing me to do so can be the best thing. If while I’m resting, my husband takes on some of the household work that needs to get done, then it’s even better. I’m so grateful and it helps me feel less guilty about not being able to do as much as I used to.” – Jennifer L.B.
17. “Reassure us that you’re there and not leaving. That we aren’t a burden.” – Jennifer M.
18. “My husband arranging for someone else to take our daughter for the day and then him spending time holding me during a flare-up is exactly what I need. I’m convinced being held and cuddled really helps eases my pain, even if it’s just placebo effect. Don’t get me wrong, I love my daughter to bits, but sometimes I need to come first. Obviously he can’t just ignore her – she’s 6 and an only child so needs attention too. We’re lucky we have six sets of relatives who live locally enough that they can often take her out for the day at the drop of a hat.” – Nikki A.
19. “Some of the cleaning that is difficult to do while in pain. Vacuuming is a huge help!” – Nichole L.
20. “A big thing was helping me bathe. He made it seem intimate knowing I was feeling vulnerable for needing help. On the side of small things, he brushed and braided my hair for me. The longer my hair is, the easier it is to manage but it still hurts my arms and hands to brush it.” – Julia O.
21. “My husband installed a shelf in the laundry area where I can stack clothes without reaching over my head, which is a major trigger for my back pain.” – Kathy A.S.
22. “Take the time and learn about your conditions, side effects, medications etc. It makes a huge difference if they’re a little educated on what you’re going through.” – Kel W.
23. “My husband takes over for me whenever I get a flare. No matter what kind of day he’s had. Be there for your spouse. It’s the small things.” – Amber W.
24. “Resist the urge to give unsolicited medical advice. It feels like judgment, a scolding, like we’re not doing a good enough job of being sick. Instead, listen compassionately and ask how you can help.” – Shannon S.
25. “I wish my friends and family would take the time to read the posts I share from , considering I share the ones I want them to understand about what it’s like.” – Richard R.
26. “Love them. Seriously, just having my husband tell me he loves me every day is the best medicine in the world sometimes. Receiving texts throughout the day asking how I’m feeling or if he can pick something up from the store on his way home for me shows me how much he truly cares. I appreciate and love him for everything he does.” – Ashlee A.
8 Ways You and Your Partner can Deal with Chronic Pain and Illness
This is not a substitute for medical advice, nor is it meant as professional consultation with a mental health professional. If you have ongoing symptoms which interfere with your functioning, please seek appropriate help.
Disease is not sexy. Neither is chronic pain or illness. We shy away. We don’t want to talk about it. We hope if we ignore it, it’ll go away. But it won’t. We’re a culture obsessed with youth, beauty, vitality, wrinkle creams. We refuse to look death in the eye.
We’re aging everyday. It’s inevitable: we will get sick. With luck, it’s finite and you will recover. But what if you endure ill health every day? It’s unrelenting for years, no cure, little or no relief.
We suffer from many conditions where our only option is to manage symptoms: diabetes, arthritis, Parkinson’s, MS, chronic migraines, irritable bowel disease, fibromyalgia, to name a few. Chronic illness disrupts living, often leading to depression and anxiety. Common feelings include:
- Shame and embarrassment.
- Worry about being a burden or “dependent.”
- Fear of rejection.
- Overwhelmed by handling a relationship and the demands of living with illness.
- Guilt about not being “equal” to partner.
- Struggling between feeling isolated or alone and wanting to be with someone.
- Missing emotional or physical intimacy.
- Feeling undesirable, out of control or helpless.
- Feeling guilty that your partner has to put up with or cope with you.
- Judging yourself as “less than.”
- Feeling trapped in your body.
As a side effect of medications, one of my clients with Parkinson’s suffered from erectile dysfunction. He felt unworthy, undesirable, and unable to please his husband. Another client with MS judged herself unsuitable, inadequate, and defective because she predicted not being able to have a child. Another client with colitis, having episodes of uncontrollable bowel movements, felt ashamed and dirty. This led to him feeling anxious and sexually inhibited with his wife.
Here are eight ways to have a strong relationship in spite of these issues:
- Focus on what’s positive and good about you. This goes beyond Pollyanna-ish affirmations. It’s not about placating yourself nor about empty platitudes. We all have beauty and goodness within. You do, too. Challenge yourself to reach inside and pull out what’s shiny: your resilience, your grit, your determination. Don’t feel you have any of these? How about your beautiful brown eyes? Don’t have brown eyes? How about blue? What about your soft skin and tough spirit? Your generous actions? Your kind heart?You are thousands of macro and micro great things. They make you. They color you. You define them. But chronic illness makes you forget. Remember: you are more than your disease, much more than your pain. The more positives you rack up, the more it will spill over onto your partner and create a well of love from which you both can drink.
- Talk to each other. Few of us actually sit down, look each other in the eye, and make a real connection without shutting down or reacting. Sit down with each other and without distractions (no phones, TV, gadgets), reach out and make physical contact. Lean over and touch your partner’s knee, hand, shoulder, hair — this signals readiness, attentiveness, openness. This says, “game on, let’s go!” Share whatever and however.
- Take a risk: feel. Get closer to yourself, and actively let yourself feel your emotions. Experience your vulnerability in front of your partner. This reflects your trust. Not being rejected will strengthen you. If you are rejected, you can start the process of figuring out what went wrong between you both, and whether it can be fixed.
- Express gratitude. Do you love the thickness of his hair? How she smells? Him getting up 10 minutes early to make you tea? How about him opening your car door? The goodnight kiss? Her picking up food for you both? You’re registering what’s positive and actively feeling good about it. Let it wash over you. Steep yourself in it, and feel warmed. When you rack up a wealth of positives, the negatives have a harder time crossing the barrier into your self.
- Soothe each other. Use your kind words, give reassuring touch, a loving look, a lingering and warm hug. What do you know about your partner? Do they like baths? Picnics? Walks on the beach? Action movies? Whatever it is, go out of your way to give them a comforting experience. Prioritize your partner and make sure they feel loved. Taking the focus off yourself, getting off the negative obsessive loop about your physical limitations — this relieves you. Love begets more of the same, and you’re creating a positive feedback cycle. The love you give out will ricochet back to you. You are not doing it for this self-centric reason, but action/reaction: this is the law of human interaction.
- Soothe yourself. The strategies are the same! Start a conversation with yourself. Use your kind words, hold your own hand, place a hand to your heart and feel it beating. Breathe. Think of the good and positive. Allow your mind to hover over these. As your mind drifts into the negative, gently bring it back to the positive, and focus on your pulsing breath. One breath at a time, take your time as you breathe. As you inhale, notice your belly moving out. As you exhale, your belly will be moving in. Take solace in your life force, your breath.
- Tell your partner what you need. Do not give your partner the silent treatment. Do not indulge the tendency to wallow in unhappiness, with the mindset, “If he or she really loves me, he or she would know what I need, and I shouldn’t have to ask.” Remember, you must teach your partner how to love you. When, why, and how should your partner give to you? Tell them, clearly and explicitly. Leave no room for confusion or mixed signals. For example, “I feel hurt and disappointed when you didn’t ask about my doctor’s appointment today. I wish you’d remember; it’d make me feel cared for. Could you hold me tightly?”
- Stay connected to the world. This buffers against isolation, and acts as further adhesive for your relationships with others. Socialize whenever you’re able. Every bit counts. Make it a point to chat with a neighbor, the mailman, the grocery clerk. Get out of the house, if only to the dog park. This helps guard against total depletion.
Do some or all of these. On your hardest day, if you do just one of the above, you’re adding to the relational dance, and to your emotional bank account. Balancing your illness in a relationship is hard. But with practice, you’ll build muscle memory, and over time, your habits will became automatic. With consistency, you’ll feel relaxed, content, and at more at ease.
Pollin, I. & Kanaan, S.B. (1995). Medical Crisis Counseling—Short Term Therapy for Long Term Illness. New York, NY: W.W. Norton & Co, Inc.
8 Ways You and Your Partner can Deal with Chronic Pain and Illness
How to Keep Your Marriage Healthy When One of You Is in Pain
Pain pulls you into yourself, but it’s critical that your spouse helps share the burden. (ISTOCKPHOTO)
Pain pulls you into yourself, but it’s critical that your spouse helps share the burden.(ISTOCKPHOTO)
For many chronic pain patients, their spouse can do a tremendous amount to help, but the patient, in the end, is isolated with his or her pain. The burden of living with it and helping with it can put an enormous strain on even the happiest marriage.
Jan, 45, of Boulder, Colo., recognizes that her chronic back pain has been very hard on her marriage.
“People get divorced over this,” says Jan, who is still happily married. “My husband doesn’t want to deal with this, and he’s the nicest guy in history. But no one can feel your pain.”
She understands the burden that pain can put on a spouse.
“I’m not the kind of person that has lunch and pours out my sorrows on friends. I don’t want to talk about it. So who gets to hear it?” says Jan. “My spouse. Maybe he gets more than his fair share.”
Educate your spouse
“It’s a major concern,” agrees Todd Sitzman, MD, a past president of the American Academy of Pain Medicine. “I see it on a weekly basis. There’s isolation, not wanting to go out, not wanting to participate in marital relations, and the marriage suffers.”
Dr. Sitzman believes that taking time to educate your spouse can be a big help. The key things to communicate include the following.
- The condition you’re is going through is real.
- It’s often lifelong.
- You have no control over your symptoms.
- Along the way you may experience good, pain-free states, but there may be exacerbations of the pain over time.
“If the spouse doesn’t understand this,” Dr. Sitzman says, “I think that leads to a lot of conflict within the marriage.”
Diving more deeply into the cause of conflict
One of Dr. Sitzman’s back-pain patients lost her job. She and her husband had subsequent financial difficulties and fought until the husband said that he’d had enough.
Dr. Sitzman brought the couple into his office for an in-depth talk. Beyond the immediate crisis, he recognized a common root problem: the failure of the patient to acknowledge her limits, and the failure of the spouse to recognize or understand those limits. With adjustments, family activities were split into parts that the wife could participate in and those she needed to sit out—so that no one was resentful about it.
Pain can sometimes bring you closer
For some couples, battling with the challenges of chronic pain actually brings them closer together. “We had only been married for six months when my symptoms began,” remembers Shelley Kirkpatrick, 32, of Bellefontaine, Ohio, who suffers from severe fibromyalgia. “At the worst of my symptoms my husband was literally bathing me, brushing my teeth.”
“Now that we’ve been married almost four years, he has seen me at my very best and he has seen me at my very worst,” says Kirkpatrick. “And through all of those times he has been 100% committed, even though there have been times where he has been very frustrated and overwhelmed and rightfully so.”
“We’ve dealt with financial crises, we’ve dealt with employment crises, we’ve dealt with health crises, and those really are some of the worst things that a couple can experience, and we have made it through. So we know that when the next crisis comes, whatever it is, that we can make it through.”
6 Ways to Be a Friend to a Friend Living With Chronic Pain
Friends often don’t know what to do and what NOT to do or say when someone they care about develops a chronic pain condition. We asked chronic pain sufferers to share their advice to help guide friends eager to be supportive, encouraging, helpful, and understanding.
Knowing what to say and do can help you be a good friend to someone living with chronic pain.My friend Kathy once derided me for not telling her I’d hurt my back and that the pain and stiffness had kept me house-bound for days. “I would have come over with food and kept you company,” she said. I was surprised by her obvious annoyance. For many years, Kathy had been living with Stage 4 breast cancer. She was in and out of hospitals for monitoring, tests, and treatment. She lived with varying degrees of pain.
“I didn’t want to bother you,” I explained. In truth, I felt as if I’d be courting sympathy for something minor (my sore back) from someone dealing with a life-threatening illness on a daily basis.
But Kathy wasn’t having it. “Cancer is what I have, it’s not who I am,” she said. “I’m also your friend.” And she reminded me that she was more than capable of saying “no” if she wasn’t up to it.
I learned an important lesson about making assumptions: Don’t.
A couple of months later when I came down with a bad case of the flu, I called Kathy. She brought chicken soup and tissues and kept me company. We laughed a lot.
To Be or Not to Be
When a friend or family member develops or is living with a chronic pain condition, we all struggle with how to be and how not to be. We all want to be compassionate and supportive; to be helpful without being intrusive; and to cheer them up whenever we can.
While dealing with a friend’s illness is never easy, chronic pain conditions are especially difficult because the pain can vary in intensity from day to day, symptoms wax and wane and sufferers often don’t reveal the pain. Sometimes, chronic pain isn’t visible. As one Lyme disease patient put it, “Just because I don’t live my pain out loud every day doesn’t mean I’m not in pain.”
LaRita Brallier Jacobs has another view. “It’s not fair if you lament that friends and family just don’t get how exhausting chronic pain is if you’re spending all your energy pretending to be Superman/woman,” she says. “I did that for too long.” Brallier Jacobs of Seminole, Florida, has been living with rheumatoid arthritis for more than 20 of her 56 years.
Working Through It
When a friend is suffering, whatever the cause, they don’t suddenly turn into another person. All their good and bad qualities remain and sometimes become magnified. Now and then, one or both of you many offend, anger, or disappoint the other. Mistakes will be made on both sides. That happens between close friends even when illness isn’t a factor. When these missteps and misunderstandings happen, acknowledge the situation and have a calm conversation with your friend about what happened and why and how to avoid the quarrel in the future. Then apologize to each other and move on.
There will be bumps in the road but we hope the dos and don’ts we’ve compiled provide insight and wisdom that will help you minimize the chances of saying or doing the wrong thing and maximize your chances of being the friend you’d want if you were the faced with chronic pain or illness.
#1. Don’t assume. Ask.
Chronic pain (CP) isolates sufferers both physically and psychologically making it difficult for those with pain to interact with the world and their friends. “All humans need to feel useful,” says Brallier Jacobs . “When friends allow me to help them, I feel useful,” she says. From January into April, Brallier Jacobs prepares tax returns for friends. Of course, she makes sure her “clients” know that she needs ample time to finish the returns. No last minute filers for her. “I can’t predict what my body will dictate on April 14th.”
Tara Langdale-Schmidt suffers from vulvodyna. Since her chronic pain can be unpredictable she appreciates invitations made without feeling obliged to accept. The uncertainty of chronic pain shouldn’t stop you from inviting your friend to join you or a group of friends for dinner, a movie, or any other activity. “Don’t automatically assume chronic pain sufferers can’t participate,” says Tara Langdale-Schmidt, 32, of Sarasota, Florida. “Invite them so they won’t feel left out,”
For years Langdale-Schmidt suffered from severe vulvodynia, a condition that causes intense sharp, stabbing, and burning pelvic pain. She’s since found a treatment that has diminished her pain. Even so, she knows chronic pain is unpredictable. A person can go from having a good day to a bad one in minutes, explains Langdale-Schmidt.
So when you invite someone with CP to join you for a movie or dinner, assure him or her that the invitation is non-binding and that if they have to cancel—even at the last minute—you will understand. An invitation without obligation is one that a person with CP may feel more comfortable accepting.
#2. Don’t take it personally.
When a person is ill, we want to visit, to cheer them up, amuse them or just keep them company. But for people with CP, the unpredictability of their pain makes it difficult to plan and engage with visitors. They may decline your offer to visit. And while it may seem that your friend doesn’t want to see you, the reality is different. “These decisions are not made lightly,” says Alyssa Relyea.
Alyssa Relyea has TMJ, a painful condition that affects the jaw. She encourages her friends not to take it personally when she rejects invitations but to keep trying. For over 15 years, Relyea has lived with the constant pain and dysfunction of severe temporomandibular joint disease (TMJ). The disorder affects the way she talks, smiles, eats, and laughs. Relyea who volunteers at the American Foundation for Suicide Prevention, where she serves as the Chairperson for the Women’s Outreach Committee, says that she has to “make decisions every hour of my day about who I will talk to, how much ,and whether I need to say no.”
So even if your friend repeatedly turns down your invitations to go out or to drop by, keep asking (always ask if you can visit, never arrive unexpected) and don’t take the “rejection” personally. Saying “no” to your visit isn’t a reflection of your friend’s affection for you. Rather, it’s an indication of how they are feeling on any given day.
#3. Don’t touch without asking.
When you do meet up with or visit your friend, always ask if it’s OK to hug or touch them. People with diseases that cause nerve pain—Lyme disease, fibromyalgia and Complex Regional Pain Sydrome/Reflex Sympathetic Dystrophy (CRPS/RSD), for example—have an increased sensitivity to touch. Barby Ingle, President of the International Pain Foundation has CRPS/RSD. A touch, a hug, or even a handshake “can send me into a flare for minutes, hours, or days,” says Ingle.
#4. Don’t criticize. Do encourage.
It’s easy to fall into the trap of offering unsolicited advice about what the person with CP should be doing or might consider doing. Although it may be well-intentioned, suggesting therapies or treatments you’re read or heard about probably isn’t a good idea unless you know your friend welcomes that input.
Barby Ingle has CRPS/RSD and advises against touching friends with chronic pain without permission as it can trigger a pain flare in some people. “Very often chronic pain requires more than pulling up your boot straps and digging in,” says Relyea. “It’s easy to stand outside a situation and see what you think needs to be done to relieve pain, but you probably don’t have the whole story.” Relyea resents it when people tell her to exercise more. “I exercise plenty and am very active,” she says, noting that the person offering that bit of advice isn’t living in her shoes.
Also, keep in mind that people in pain need encouragement to become their own best advocate and to stand up for themselves. “When it comes to their care, people have to be OK with the choices they make,” says Ingle. “If someone says, ‘I wouldn’t do that treatment , and you shouldn’t either,’ I remind them that we are all individuals.” The moral: don’t push your agenda on others.
#5. Do offer help. Don’t ask open-ended questions like, “What can I do to help?”
It’s important to know what you’re comfortable doing and what’s simply not in your nature. If you’re someone who can’t handle hospitals or doctors, don’t offer to accompany a friend to a medical appointment. Instead offer to do something that suits your skills and personality: run errands, make meals, shop for groceries, do laundry, etc. If you’re a fantastic organizer or a wiz at straightening out medical insurance, offer those skills. You get the idea.
Be specific so you friend doesn’t worry that they’re asking you to do something you really don’t want to do. Also, consider that it’s easier and more comfortable for the person with CP to accept your offer if it’s presented in the context of something you’re already doing. For example:
- I’m making a chicken tomorrow. Can I bring you some?
- I’m going food shopping tomorrow. How about I pick you up some salad fixings, fresh fruit, milk, coffee, tea, and any other staples you need?
- I’m taking my kids to the park tomorrow. I’d love to take your kids along to keep mine company.
- I’m running a bunch of errands this afternoon. I can easily check some items off your to do list while I’m at it. Do you need anything mailed, picked up or dropped off at the cleaners or shoemaker?
- I’m in the mood for some canine company. Can I walk your dog?
# 6. Top 10 Things NOT to say
- The pain is in your head. (And we don’t mean a migraine.)
- It could be worse. (This one is particularly grating. It can always be worse.)
- Consider the alternative. (Not helpful.)
- God never gives us more than we can handle. (Unless you know for certain that your friend is actively religious and is motivated by this belief.)
- Everything happens for a reason (see above).
- God works in mysterious ways. (see #4)
- You can will the pain away. (No, you can’t.)
- You don’t look like you’re in pain. (Self-explanatory)
- If you exercised more, took vitamins, slept more, danced more, etc., you’d feel better.
- Maybe you should try this or that therapy. (If you have medical expertise or personal experience or if your friend brings up a particular therapy they’re interested in, helping them make a decision is fine. Otherwise, don’t play doctor.)
The Magic of Ordinary Days
When every day is a struggle, sometimes the best gift a friend can give to a friend with CP is the assurance that you’ll be there through it all. Living with chronic pain is a wrenching struggle. My friend Kathy once said it made her long for the joys of the ordinary. It’s a sentiment echoed in the 2013 book, How To Be A Friend To A Friend Who’s Sick. In it author Letty Cottin Pogrebin, shared what she’d learned after being diagnosed with breast cancer in September 2009 at the age of 70. There are times, she wrote, “When the kindest thing you can do” for the ill “is to confer upon them the honor of the ordinary.”
Updated on: 04/11/17 Continue Reading: Living With Burning Pain: One Patient’s CRPS Story
Ten Tips For Communicating With A Person Suffering From Chronic Pain
Pain is in part a psychological problem involving a range of emotions. The initial response to pain is fear, which is appropriate since pain represents a threat to identity and the ability to work, love and play. However, when pain persists, fear turns into anxiety and depression.
The effect of depression is for people in pain to show less emotion, and thus to not appear as though they are in pain. Pain is also very difficult to convey in language, making it even harder to understand what the pain sufferer is experiencing. So to understand a person in pain you have to remember that pain is a highly complex and individual thing.
The other thing to remember is that pain is different for everybody, depending on the personality and life history of the person experiencing it. Thus, you cannot know another person’s pain.
Mark Grant is a psychologist, specializing in the management of chronic pain and trauma. His advice is based on many years of clinical experience working with persons affected by chronic pain and trauma.
Mark has also conducted research regarding a multi-modal approach to pain management. He is the author of two self-help tapes which use ac
celerated learning principles for sufferers of chronic pain and stress: Calm and Confident based on EMDR and Pain Control, based on EMDR. He has also spoken at numerous international conferences and workshops about pain management
How to Support Someone With Chronic Pain
Chronic pain can lead to discouragement and loneliness for many people. If you have a friend or loved one in this situation, here are a few ideas for how to support them.
Chronic pain can make it difficult to enjoy even the simplest daily activities.
Read Chronic Pain As a Disease: Why Does It Still Hurt?
Ask how they’re feeling
Chronic pain, by definition, isn’t a short-term problem. Just because you asked someone how they felt a month ago doesn’t mean you know how they feel today. Consistently give them space to talk about their health rather than ask about it once and never bring it up again. This gesture will let the person know you care.
See Understanding Chronic Pain
Your instinct may be to avoid asking how someone is feeling, perhaps out of fear of coming across as awkward or nosy. But this person could interpret your silence as a lack of concern, and they might feel lonely as a result. Show interest in their health rather than avoid the topic altogether.
Watch: Depression and Chronic Pain Video – Treatment, Symptoms, and Causes
Avoid steering the conversation to your experience with pain. The other person might feel as if you are more interested in talking than listening. Remember, they are in pain. Listen first and share after if you feel it is necessary.
See 4 Tips to Help Cope With Chronic Pain and Depression
Avoid giving health advice
It’s natural to want to help someone in need and find a solution to their problem. Perhaps you heard about a certain medical procedure from an acquaintance or read about a pain-relieving supplement online, and you can’t wait to recommend it to your friend or loved one.
See 3 Things You Should Never Say to Someone With Chronic Back Pain
But you are this person’s friend, not their doctor. Refrain from suggesting what treatment they should try. Chances are this person has discussed options with their doctor and considered various treatments. Suggesting various solutions might sound inconsiderate to them, even if your concern is genuine.
See 11 Chronic Pain Control Techniques
Instead, ask this person which treatments they have considered or about their experience with pain.
See Chronic Pain Coping Techniques – Pain Management
Be understanding and accommodating
Chronic pain can come and go, depending on the day. The person in pain may have to change or cancel plans on occasion.
See Opening and Closing the Pain Gates for Chronic Pain
Rather than expressing annoyance or frustration, try to be understanding. You can even go the extra mile by giving multiple options for when you can meet and suggesting places that are closer to where the other person lives or works. Be sensitive to circumstances that may present physical difficulties for this person, such as which coffee shops or public parks have uncomfortable seating. This extra awareness signals thoughtfulness.
Avoid saying things such as, “But last week you said you were feeling better.” Understand that there are good and bad days, and your friend or loved one is likely trying their hardest to live a normal life.
Ask how you can help
The person in pain may need help but may be uncomfortable asking for it directly. Ask how you can tangibly help them around their house. Offer to bring over a meal or provide free childcare for them while they get some rest.
This person may not take you up on your offer, but simply making your willingness known can bring comfort and assurance to a person with chronic pain. It shows you care for them and are aware that chronic pain affects their day-to-day life.
Follow these ideas and see if they encourage the person in your life who has chronic pain.
Types of Back Pain: Acute Pain, Chronic Pain, and Neuropathic Pain
All About Neuropathy And Chronic Back Pain
Caring for someone with chronic pain
A lot of people living with chronic pain find having a supportive team helps them to manage their condition. You might help communicate with and coordinate this team, which could include medical professionals, colleagues and bosses, exercise coaches, teachers, family, friends and community members.
Continue to treat them as a person
It’s often helpful for people with chronic pain to learn to recognise that their pain doesn’t define them: it’s part of them but it isn’t all they are. You can help with this by remembering to treat them not just as a person with pain, but a rounded human being. While you will show concern about their pain and comfort, you can still be interested in other facets of their lives like their hobbies, job and family.
Look after yourself
You are best placed to help someone else when you take good care of yourself. Take time out to focus on yourself and your own interests and goals, and take care of your physical and mental wellbeing.
Just like having chronic pain can be emotionally trying for the person with pain, you might experience strong emotions while caring for them. You might feel sad, frustrated or angry that this has happened to them and mourn the changes in their lifestyle or future plans, particularly if the person you are caring for is a partner or family member. If you are feeling overwhelmed, depressed or anxious, it’s important to speak to someone about how you are feeling, for example your GP or an organisation like Carers Australia.
More tips for carers and those with chronic pain can be found from:
- National Pain Week
- Australian Pain Management Association
- Chronic Pain Australia
- Pain Australia
Test after test, doctor after doctor, and still no relief. Those with chronic pain know the cycle well. This seemingly never-ending search for relief, paired with pain’s constant presence, can oftentimes breed frustration, anger, even outright depression. It can also strain one of the most important things in life: your relationships with the ones you love. But, just like with every other aspect of pain, it’s all a matter of finding the right treatment.
There are multiple ways in which the presence of pain can be detrimental to even our closest relationships. According to Advanced Pain Management licensed psychologist Mary Papandria, “Oftentimes, the pain patient becomes fixated on their pain. That’s all they talk about, think about, focus on. Their world becomes smaller and smaller … they have little time or attention for other people in their lives.” As a result, their loved ones, including their spouse, friends and family, can feel neglected and unimportant.
According to a Journal of Pain review, as pain sufferers become more isolated from those they love, and more psychosocially impaired in general, spouses can become less satisfied and begin to view their marriage as maladjusted.
The changing roles which pain brings about are another factor that can negatively impact many relationships. As the book Relieving Pain in America, issued by the Institute of Medicine of the National Academies, puts it, “Family members find that … they must take on new roles (as caregiver and morale booster) and greater responsibilities in the family (e.g., grocery shopping, chores, errands) the burden on them increases.”
These extra responsibilities, which can oftentimes be incredibly overwhelming, says Papandria, can create a sense of resentment toward the pain sufferer, like he or she is using their pain as an excuse. And the individual in pain, especially if it’s a female who isn’t used to asking for help, can often feel like a burden on her partner.
“Furthermore,” states Papandria, “who the pain patient was before the pain may have disappeared. They aren’t themselves anymore and the spouse may feel that they don’t know them anymore.”
The Effects of Relationship Discord
All of these factors can create tension, frustration and anger between the two, as well as consequences beyond the relationship. For instance, husbands of patients with chronic pain, compared to those married to women without pain, report more loneliness, higher stress levels, lower activity levels and more fatigue, in addition a decline in marital satisfaction.
But more than that, relationship turmoil can have an impact on pain levels and the effectiveness of treatment. In a study from the journal Behaviour Research and Therapy, one year after completing a pain program, those with non-supportive families relied more on pain medications and reported having more pain sites, while those with supportive families had less pain intensity and greater activity levels.
Papandria explains it like this: The negative emotions, depression and anxiety that oftentimes accompany pain and strained relationships can “all result in a worsened perception of pain, increased disability and lessened benefits from treatment. … People tend to be pessimistic. They focus on what’s wrong vs. what’s right. As a result, they tend to view treatments as not being effective and see their pain as worse.” Their negative emotional state could also lead them to focus too heavily on their pain, she says, causing them to take notice of every twinge and spasm – and making them think treatments aren’t helping.
A Multimodal Solution
Since pain, emotions and relationships are so inextricably linked, to effectively treat one aspect, you have to treat them all. That’s where a multimodal approach comes in.
Treating the pain through a variety of minimally invasive treatment options also helps to improve emotions and relationships. “If patients have better pain control, then they are going to be less depressed/anxious and less apt to isolate,” says Papandria. “They will also be less focused on the pain and will have the energy and attention to attend to other things and people.”
And by addressing emotional issues and strained relationships, individuals can achieve better treatment outcomes, while simultaneously learning how to communicate their fears and needs, how to identify harmful thought patterns, how to set achievable goals and how to cope with the changing roles that pain has brought to their lives.
Pain doesn’t just affect the person experiencing it – it affects the people they love and the relationships on which their lives are built. By treating the emotional pain alongside the physical, the fulfilling life that has seemed elusive for so long may once again be within reach.
Institute of Medicine of the National Academies. Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Washington, D.C.: National Academies Press, 2011.
It’s not surprising that people living with chronic pain often have high levels of emotional distress. The question that Stanford researcher Drew Sturgeon, MD, a postdoctoral pain psychology fellow in the Stanford Pain Management Center, recently aimed to determine was why. Is a patient’s depression or anger caused by his or her inability to do physical things or is it perhaps because pain can limit social relationships?
“What I hear from patients is that it’s not just that it hurts, but that the pain takes you away from things that matter to you – the things that are meaningful to you,” Sturgeon recently said.
To explore this further, Sturgeon and colleagues analyzed data from 675 patients who came into the Stanford pain clinic and filled out data sets for the national open source Collaborative Health Outcomes Information Registry, referred to as CHOIR. CHOIR is a registry that originated at the Stanford pain center to help improve the collection and reporting of data on pain.
The researchers examined both physical functioning and social satisfaction reported by chronic pain patients, since both have been shown to play a role in causing anger and depression. Their results — published online recently in the journal Pain — show that the effects of chronic pain on a patient’s social relationships can be a key trigger of depression and anger, even more so than the limits that pain can place on physical activity.
“My suspicion was that there was going to be a stronger frustration when affects social relations,” Sturgeon told me. “Relationships are one of the strongest predictors of mood. If you’re an avid bicyclist and can no longer cycle, that’s frustrating. But if cycling is the primary source of your social relationships, that’s even more frustrating.”
“The conversation when you have a patient with chronic pain who is very depressed tends to how we treat the pain,” he continued. “Perhaps considering how the pain is affecting the people around the patient is also important… This is something that as a field we haven’t been paying very good attention to.”
Previously: National survey reveals extent of Americans living with pain, Chronic pain: getting your head around it and Advances in pain research and treatment
Photo by rochelle hartman
Effects You Might Notice in Your Loved Ones and Relationship
Losing the emotional willingness to become intimate or associating pain with intimacy will affect other aspects of your relationship. You two may stop holding hands, kissing, hugging or even simply chatting about the day. If you and your partner find this happening, sit down with a couples’ counselor to deal with these emotional effects.
As with any activity, sex is not out of the question for you and your partner despite chronic pain. It just requires communication and planning. And like healthy exercise, your partner may find that sexual intercourse relaxes and reduces pain due to the flood of endorphins from orgasm.
If your family or friends recognize that you have a problem that needs addressing, its time to pay attention. People outside your marriage can often spot a serious problem before you can. Family members and friends often have intuitive hunches or become concerned about your relationship based on what they observe. And don’t forget your children’s response. Their behavior can often provide a barometer of what is occurring inside your relationship and home. You and your spouse may believe that the current level of interaction and health in your marriage is okay and just the way it will be, but your children may sense that something is wrong and needs to change. Young children often react to marriage problems through abnormal behavior. They begin to act out at school, around friends or even at home. The same is true of teens, who will often react to trouble at home by becoming involved in activities or with people that are out of their normal circle.
This advice to seek out professional help counts double with regard to any suicidal symptoms you or your loved one may be experiencing. If you find yourself thinking seriously about suicide, please make an appointment with a mental health doctor (a psychiatrist, or psychologist) as soon as you can.
A lifetime condition may seem daunting to you and especially more so to your loved one with chronic pain. It may seem like a burden on your relationship, but if you are honest and supportive with them you’ll find that your relationship is strong enough to handle chronic pain.
And that with a little planning and a little teamwork, you and your loved one can live happy, fulfilling lives.
How has pain interrupted your relationship or love life?
How have you been able to maintain love despite the pain and suffering?
Comment below…I’d love to hear how you overcame this obstacle in your relationship.
Children: Seeing your parent in pain is difficult for any child, particularly for those who witness their parents in pain everyday as a result of chronic pain syndrome. Young children may be confused as to what is happening and, if you’re having a bad day and understandably have a short temper, they’re likely going to take things personally, which may lead to them believing that they are the problem. On the flipside, they may feel angry that you’re no longer as available as you once were before chronic pain affected your life.
Friends: As a chronic pain sufferer, you will have good and bad days. Sometimes, your symptoms are too painful and uncomfortable to handle, leaving you with no choice but to cancel plans you’ve made with friends. Unless your friends are also chronic pain sufferers too, their understanding of the condition will likely be poor, just like so many. Due to them not being able to relate to the pain you go through everyday, they may take your cancellations personally and will feel like they’ve been snubbed. In addition, chronic pain has the ability to change the way you are, whether it be by affecting your confidence or changing your outlook on life. As a result, the friendship you once had with a friend may no longer be the same.
Now that we’ve gone through the ways in which chronic pain has the ability to affect your relationships with the various people in your life, it’s now time to provide tips on how you can better manage those relationships and ensure they aren’t defeated by chronic pain.
Communication is key. Don’t keep everything bottled up and keep communication strong between you and your loved ones. If you’re having a bad day, tell them. If you’re having a good day, also tell them. Staying silent will detach you from them, making you feel both isolated and alone. When communicating, it’s important to remember to keep a balance and bear in mind that your conversations will differ depending on who you’re conversing with; for example, when talking through things with your children, you’ll need to avoid talking about pain and discomfort, so they don’t feel down and depressed.
Stay close to your spouse. In addition to communication, maintaining a physical relationship with your spouse is also important. Just because you have chronic pain syndrome, it doesn’t mean you can’t stay intimate. Plan for encounters with your partner around your medication schedule and monitor daily pain to estimate when your pain levels will be lowest.
Make others feel useful. Unfortunately, chronic pain is incurable, which makes it difficult for loved ones, particularly spouses, who feel helpless and unable to help. Sometimes, asking for help from your family or friends is a great way to make them feel of use and closer to you. If you’re experiencing pain, ask your partner to help you relax. If you’re struggling with an activity, ask your friends to help you. By helping you, they will feel accomplished.
Don’t cancel, compromise. Instead of cancelling plans with family or friends, try to compromise as much as possible. If you’re experiencing a flare-up, invite whoever you’ve made plans with to the comfort of your own home, so you can feel as relaxed as possible in their company. Alternatively, if you think you could manage some level of activity with the pain you’re feeling in that moment, don’t cancel plans and don’t let chronic pain win. Instead, follow through with your plans and get yourself out there; after all, it’s not healthy to keep cooped up all the time.
Do as much as you can. Similarly to the above, try to help out as much as you can at home. Your spouse is there to look after you through sickness and in health, however, they would appreciate the help from time to time. When you feel able, offer to help them with simple tasks and try to stay active. If your family members can see that you’re making an effort, they will appreciate it, even if you can’t be of much help.
All in all, chronic pain is extremely frustrating, however, communicating with family and friends is key to keeping them close. Although chronic pain will directly affect you as a sufferer, it will also have a huge impact on the lives of your family and friends and you must remember that. Without them, you’d feel alone, so remember to be understanding of what they’re going through too.
We do not endorse any research, studies or sources mentioned within our blogs and comments. Furthermore, we do not endorse any medical advice provided, and would strongly recommend anyone seeking medical advice to contact their local healthcare provider.