The people you love live with your pain too. Although they can't feel your pain, they watch you suffer and then they suffer too. They may feel inadequate when they can't help or frustrated when their suggestions don't make a difference. They may miss the “old you” and feel depressed. Your loved ones may sometimes feel annoyed or even angry; sometimes your pain may feel like it is in charge of both of you. Sometimes they feel lost too.
Take Care of Love
A reader recently wrote:
“So much of the focus of daily life is on me and my pain problem, I forget about how hard it must be for my wife. I try to make a special effort to let her know what she means to me. I guess I try to take care of our love. That matters more than anything.”
What does it mean to “take care of love”? That is a difficult question. I have listed a few strategies that seem to be helpful. My ideas probably won't surprise you, but they may remind you of how you have loved your people in the past. Take stock of your relationships. If some of them need special care, these suggestions may get you back on track.
- Kindness and warmth – sometimes it is easy to skip this part of a long-standing relationship. But, a kind word, a gentle tone, a touch, or taking the
time to listen shows that you care.
- Taking the other person's perspective – try to understand your loved one's point of view, how they see things, what they feel, what worries them, what makes them happy, what triggers depression. Show that you care about who they are and what they need.
- Communication – direct communication is generally the best. Try to convey ideas as clearly as possible and work to understand what is being said to you. Try to avoid jumping to conclusions, reading people's minds, or assuming you know what was “really” meant.
- Show affection – we all love to receive affection and giving it feels good too.
- Have fun – do some fun things every week. They don't need to be expensive or elaborate or even time-consuming. Having fun is mostly a state of mind.
- Be respectful – saying “please”, “thank-you”, and “I am sorry” shows that you care and respect each other.
- Give top priority to your relationships. Love matters.
About the Author. Dr. Linda Ruehlman is a social/health psychologist and researcher, co-founder of Goalistics, and Director of the Chronic Pain Management Program, an interactive site that helps people with chronic pain to manage their pain and live richer, more effective lives.
DISCLAIMER: This blog is provided as an educational and informational resource only. It is not intended nor implied to be a substitute for professional psychological or medical advice.
Linda,
Your blog has at least one underlying assumption – that spouses, children, etc. actually care. I’m in cronic pain from breaking my neck in 1997. I have a fair amount of nerve damage and such limiting the use of my arms (I shattered C1, and now C1 and C2 are fused to my skull with very invasive hardware). Two years later my wife called it quits. In 2006 She changed her mind about giving me a ride home from the hospital after promising to, because it conflicted with a massage. This is after major neurosurgery at a hospital two hours away.
I always thought the hardest thing was asking for help. It was a bitter lesson to realize it is harder still to accept that those who can and probably should help you won’t and don’t. My children, now 15 and 17, share her disinterest in helping me. I have hired someone to come in and help me around the house, and to spend a bit of time keeping me company.
I find your blogs to be generally very upbeat and optomistic, which we need more of in the world…but at the same time, it can be a bit naive. I think a partner or family member who does care wouldn’t need to read this blog entry; and a person who doesn’t care wouldn’t read the blog.
Thanks for reading!
-Evan
Hi Evan,
I am sorry you have had such a tough time. I think it is often very difficult for family members to know how to help. But, I believe it can still be worthwhile to attempt to maintain your relationship with them – and to show them that you care about them! I wish you the best and hope you will keep reading.
Linda
Thank you for the article but I think a more important issue is dealing with love when your significant other is overwhelmed, irritated, irritable and irritating. Your article is too ‘neat and nice”. Most of us are hanging on by our fingernails and our partners are completely worn down by our chronic conditions.
More practical advice would be how to foster love with a partner that says, “I’m sick of hearing about it”, “You don’t need to tell me, you are always in pain”, “I’m sick and tired of hearing about you being sick and tired”. My partner (and I bet many others) has pushed me into a closet of non-communication. My choices are to say nothing or to get into another argument.
My life has gotten very small, I go back and forth to the doctor, do my exercises, ice, heat, take the meds and do the best I can to ‘chip away at the iceberg of daily life’ so I can contribute something (anything) toward keeping our household on track.
My partner has done the “right thing” but not with “an open and loving heart” so he makes sure that I that I hear about the burden of my disability’s weight on his shoulders every day of my life.
How do you get past the point where your disability has been such a burden that it has crushed your relationship and back to a true partnership with your significant other?
Hi Judy,
I am sorry that your relationship has suffered so much. Sadly, that is a common problem. I think in some cases, it makes sense to ask a professional to help. Sometimes pain dominates the relationship. A professional can help you both to find your way back to what you mean to each other.
Linda
Judy (and Linda),
I think you and your situation are very close to “normal” for a person and family with chronic pain.
I have dragged my ex (during and after we were married) to many counseling sessions. She has no interest in what she could do differently to be more accommodating of me and my condition. Again, if she cared enough to read this blog, or go to counseling, she probably wouldn’t need to. I have good disability insurance, and her only genuine interest in me is getting more money from me. The kids now stay with her full time. They have been taught that I am a mean person. I am not, but labeling me such makes her look like a better person.
If your pain was such that you could function normally, then you simply wouldn’t have a chronic pain disability, and a bit of psychology might just do the trick. I think that information like Linda provides here would be helpful if you somehow knew that you were headed down the path of chronic pain, but had not started yet. Like the “What to Expect when You are Expecting” books. You just found out you are pregnant, and there are a lot of predictable things that will happen based on that.
But by the time you have a chronic pain disability, it is too late for (what I describe as) fluffy cheerleading. Linda, I admire your positive outlook on life and healing, but I have to assume that you have never yourself dealt with chronic pain. As Judy says, we learn to not talk about it, and do whatever it takes in side to put on a smile when we have to. Even then there is no credit for trying to act happy, only the horrible consequences for not really being happy.
-Evan
Hi Evan,
I am sorry for all you have gone through. I do think it is possible to live a good life, despite chronic pain. My goal is to share strategies that can improve life with pain. I live with several different types of chronic pain. However, in writing this blog, I rely more on my knowledge as a psychologist than on my personal experience with pain. I look at the scientific research on pain management and share what seems to work. These strategies can be helpful at any time during the process of living with pain. Giving up can be the most difficult hurdle.
Linda
Hi
I’ve stumbled on this blog & had it come to me via email . I had my tail bone removed in 2005 . Needless to say it left wide spread nerve damage . I was in chronic pain before , however that was nothing ! The problem for me is always having to explain myself . I don’t want to be center of the universe ! The other issues are loss . The two heart wrenching responces I read above would understand . You loose bits and pieces of you life . For me self worth . I ran a house hold , I was a champion gardener , teacher , volenteer in theater, wife , mother . Chronic pain has chipped so much away . My husband at first was negitive so was my whole family . However the worst was my trusted doctors ! They labeled me lazy , drug seeking , depressed, nervous . Until I found myself dumped on the doorstep of our University of Alberta Pain Clinic. Here was yet another loss . ” Renee you must fully except you aren’t dying , however there is nothing we can do to fix you or your pain ! We can keep it at bay with drug regiments & classes & therapy . Go home we need you to fully except this , come back in 6 months” needless to say my husband & I were shocked . We cried & prayed . This journey has been hell . My family has been of split minds . My husband is so wonderful ! But I know he hurts terribly , he’s worn down , he’s lost the woman he knew . There is the key . I changed . I was screaming in the night in pain only to be woken by my dear husband frantic as to what to do ? I feel helpless to heal him ? My kids have seen seizures , gone to the hospital with me , had to take up my chores , deal with an angry , sad , horrified mother.
There are so many who never suffer this great pain day in day out never stopping! That can’t possibly be understood by a person who has not suffered pain past a month . Condicending words flow like water hitting me so hard at times I feel my heart might burst !
I feel lucky that my spouce loves me , my kids love me , my whole family loves me . Luck tho has not been without bumps !
My husband has been my hero & at times my enemy . I make my life hell ! No one can do that for me here . I feel that I’m blessed in that regard . No I’m not nice all the time , in fact I’m down right awful . I have spent years in self pity ! Only hurting myself & my family. I tried to drive them off . I cried & made my own kind of pain .
With the help of our counceler ( Christian) we made it thru those moments . I’m sure there is more to come . But now I am armed with my family ! The nay Sayers out there that label me useless are wrong . I was wrong . I do serve a purpose , to love & cherish to never stop trying to live. I have learned that in all the loss I found me . So many of us in Chronic conditions won’t live long . We are more likely to get sick , suffer further injury , or waste away . It’s not our choice how our bodies react , how much pain we can endure ! You can never imagine how much pain there is if you’ve never had it. It’s like a wave over your body pulling and tearing you . Drugs help , exersicse for those who can helps . But in the end it’s a solid family that can pull us out & just love us . It’s difficult to write this as my heart has taken a beating on this subject . 12 years in terrible pain , countless doctors , blood work , MRI , cat scans , every test out there . And with each new test I keep hope that one day they can ” fix” me .
Please families out there if you read this , take up love not anger and use it to shield yourself & the one who hurts . Use compassion both the suffer & those who suffer due to us .
Renee,
Thank you for sharing so much of your story with us. I especially like something that you said you have learned after so many years: “I do serve a purpose , to love & cherish to never stop trying to live”. My very best wishes to you.
Hi Linda,
I am a chronic migraine person for about 30 years now. They started in my early 30s and I’m now 60. I guess I’m fortunate because I was able to work, although, ultimately migraines stole my career–it was said I was using drugs on the job–NO–the absentee policy was such that I had to work when I was having a very severe headache and I WAS JUDGED TO BE ON DRUGS. This is because when I have a severe headache, my speech is slurred –even my last neurologist dropped me because I was having a very bad migraine and he was on call, when I talked to him, he said I was abusing the drug Xanax; I had a wreck, my tire slipped off the pavement–I got a speeding ticket with no speed plus I am currently facing a DUI charge for the same thing–I thought if I drove 10 hours after taking the medicines I was okay but that remains to be seen as the drug tests are not back yet. My family–my husband couldn’t be kinder, he sees what I go through, he hears how my voice changes–he’s my number one fan. Our sons didn’t understand for a very long time, but after 30 yrs and me traveling all over the US for treatment–they are more understanding, I no longer ask for their help because I know they resent it. My husband and I work it out. No, it isn’t right, because we constantly do things for them plus our grandkids–but who says life is fair? Nothing about almost constant migraines is fair