Or… Family Issues #1
I come to talk with family members of patients with pain in different ways. Sometimes family members bring my patients to appointments because it’s difficult to drive. Or, a wife or mother might call to schedule an appointment for her husband or child. And many times, I invite the family member into my office as well as my patient. Why??
As you might be well aware, pain conditions affect not only you, but also your family. Your husband or wife… your children… your Mom and Dad… even your friends. Each Friday for the next several weeks, I’ll have a post on family issues. These posts will be excerpts from a handout for family members (and friends) of patients with pain that I’ve written with a colleague, Dr. David Kannerstein, who is the lead author. The excerpts are reprinted with permission from Practical Pain Management, 2007, Vol 7, 48-52. We’ve written this handout to provide information for family members and to help them with what they’re going through.
You’re invited to copy these posts and discuss them with your loved ones. If you’d like a copy of the complete handout, information is available at the end of today’s post.
1. WHAT IS CHRONIC PAIN?
Chronic pain is pain which persists beyond the time usually required for the healing of an injury or illness. Some definitions set a specific time period, for example, pain which lasts longer than three months or longer than six months.
2. HOW IS IT DIFFERENT FROM ACUTE PAIN?
Acute pain is what most of us are familiar with. It’s what happens when you twist your ankle or burn your fingers on the stove. It’s a signal that tissue damage is happening. While it may be severe, it’s time limited and responds to appropriate treatment.
Chronic pain is different. It may occur without ongoing tissue damage. It’s what happens many times when nerves get injured (known as neuropathic pain). Examples include shingles (postherpetic neuralgia), diabetic neuropathy, and Complex Regional Pain Syndrome (CRPS, also known as Reflex Sympathetic Dystrophy, RSD).
It’s difficult (or impossible) to imagine that someone can be in severe pain continually if one hasn’t experienced it. It’s normal for family members not to understand it if you haven’t lived through it. It may also be hard to stand by and accept that your loved one’s pain can’t be fixed or cured (although it may be eased and the suffering associated with it may be reduced). It may also be hard to accept that you can’t make it better.
3. HOW AM I AFFECTED BY THEIR PAIN?
If you’re in a close relationship (spouse, significant other, parent, child, sibling or even close friend) with someone with chronic pain, you’re likely to develop a variety of negative feelings as a result. For example, you may feel guilty at times for not being able to help them more. You may feel angry at them if they’re irritable or withdrawn. You may resent having to take over tasks they previously performed. You may feel depressed as a result of a withdrawal of affection or a decline in your sex life. You may get anxious about financial problems which result from your loved one’s disability. You may feel stressed by the reactions of others. For example, relatives or neighbors may say “He (she) doesn’t look that disabled to me” or “Should she (he) be taking that addictive pain medication?” In fact, both you and the family member in pain are victims of the pain problem, as are those others who are part of the family (and this applies to close friends too).
You may experience significant lifestyle changes. You may have to live on a reduced income or have to work harder to stay afloat financially. You may have to spend time getting your family member to medical and to other appointments if he or she can’t drive. You may end up doing most or all household chores and childrearing activities. You may have less time for friends and experience reduced social support.
You may experience intrusions into your life from outside agencies. For example, some insurance companies (primarily worker’s compensation) may follow or film your family member. You may be stressed also by lawsuits, disability evaluations, or independent medical examinations (IME’s).
You may also experience some positive outcomes, although this is less common. For example, if your spouse was controlling, you may actually have more freedom. If you have very strong needs to help others, you may feel good about needing to help your loved one so much. If you were experiencing intimacy with your loved one (including sex) as unwanted, a decrease in intimacy may feel positive. You may get additional support or sympathy from other family members. These positive outcomes can lead one (not always intentionally) to try to keep the situation as it is. These have been referred to as “tertiary gains.” Being aware of these can help you identify more effective ways of dealing with problems in your relationship.
If you’re the spouse of a patient with pain and you have children, you may worry about the effect of the pain on them. Children may blame themselves for their parent’s pain. It’s important to let the children know it’s not their fault. They may also get depressed about the loss of attention and affection from the parent in pain or from the loss of activities due to financial limitations.
* * * * *
Next Friday… Family Issues #2:
Answers to… Is the pain just “in her head”? Is he just faking this?
You’re welcome to copy this handout from this site, with a notation that it’s from www.howtocopewithpain.org. For a copy of the complete handout, you can contact my co-author Dr. David Kannerstein at dkanner@comcast.net. David Kannerstein is a psychologist in private practice with Margolis Berman Byrne Health Psychology in Philadelphia and SRI Psychological Services in Jenkintown, PA. He specializes in helping individuals and their families manage chronic pain.
19 responses so far ↓
Ann // Jan 15, 2007 at 8:56 am
Wonderful idea. I have several family members who are impatient about my RSD,(13 years, mirror, spreading) and other neurologic problems - and act as if there’s nothing wrong. They change the subject, roll eyes, look annoyed. Other relatives and friends say something light and supportive - and encouraging - I love them for it! Would love the complete article(s.) Thanks, Ann
kylee // Jan 15, 2007 at 9:15 am
WOW!! You’ve said it ALL! How I wish I could of had this article before my husband divorced me!!! Not that it would make a difference, but I wish I knew how to reach him NOW to send this to him … what a relief to read that SOMEONE understands!!!!!
THANK YOU!
bruce // Jan 15, 2007 at 9:31 am
i’ve had RSD for over 15 years. first wife hung-in
about 10 years. kids left home after high school,
became quite distant, and showed continued lack of understanding. second wife, and grown step-kids seem more tolerant but still relations are strained.
finances have been ok due to worker’s comp.
their observation is on-going. dr.’s remain a real
challenge for diagnosis and support. they’re both a major strain on day to day living, and
worst part of condition besides pain, of course.
life often seems bleak.
Diana // Jan 15, 2007 at 9:32 am
Great Start,
It’s very hard to explain PAIN to your family They know you don’t look well or feel well but alot of things now can be explained to them.
Thanks and Good Luck
Betty // Jan 15, 2007 at 9:40 am
Thank you
Denise // Jan 15, 2007 at 9:47 am
Thank you for addressing this subject! I was always active & self-sufficient before my accident. Both of my sons have their own families/businesses, etc., that need most of their attention. They both live in other states than me.
I never wanted to “whine” about how much pain I was in, since I didn’t have much opportunity to talk to them, much less visit with them. But when I got worse & worse, with no answers, I did try to explain my fears to them. I must have “done it wrong”, because they NEVER ask how I am doing. I don’t bring anything up at all, although they are aware that I haven’t been able to work in over 3 years!
So I’m hoping to learn how to cope with all of this. I’m a strong woman, but it’s been difficult not to have any family support, to speak of.
Dr. How to cope with pain // Jan 15, 2007 at 10:38 am
I’m glad to know this information about family issues and pain is helpful. There will be posts on this topic each Friday for the next 2 months or so.
I would also suggest that those with a specific pain diagnosis, e.g. RSD, show their family members the websites dedicated to that specific pain problem. (See http://www.howtocopewithpain.org/resources/pain-organizations.html for specific pain organizations.) Not only will this provide additional information to your family member, it will help them recognize (hopefully!!) the pain disorder as “real.”
Good luck to you all, and keep reading and adding your comments - we can all learn together.
Mick // Jan 15, 2007 at 11:06 am
I appreciate this so much. I, like many others find it is too late for me though. I had one marriage end because they didn’t understand this. The second marriage ended too, because they would roll the eyes, shake their head, and the same types of things mentioned. Also, they would talk to family and discuss the drugs (also known as medicine) and try to diagnose what I needed to do. I urged them to go to the doctor with me, but they wouldn’t make time. Ultimately, it led to the divorce. It is hard to survive chronic pain, let alone keep a marriage intact. To others, pain is simply a four-letter word.
Thanks,
Mick
Vickie // Jan 15, 2007 at 11:41 am
I love this. I have had RSD for 15 years, and I just go to my room when hurting so my husband doesn’t have to hear me whine or hear me moan. I feel so alone sometimes. He really “puts up” with it, but that’s it, no support. I’m glad you are doing this. I will send it to my family also.
SUE // Jan 15, 2007 at 3:16 pm
I GUESS THE ONLY THING I HAVE TO SAY , IS WHEN I GO TO OTHER DOCTORS FOR OTHER THINGS , OTHER THEN RSD, THEY ASK WHAT THE PROBLEM IS , AND IF I HAVE ANYOTHER ILLNESS’S I SAY RSD, THEY LOOK AT ME LIKE WHAT IS THAT, IM SO SICK OF THEM AND OTHER MEDICAL PEOPLE NOT KNOWING WHAT RSD IS, THEN IF THEY DO HAVE SOME IDEA OF WHAT IT IS THEY TAKE IT VERY LIGHTLY , THEY SAY SOMETHNG TO DO WITH THE NERVES , SOME PAIN, I JUST SIT THERE WONDERING WHY THEY ARE IN THE MEDICAL FIELD. I ALSO TELL THEM IF THEY TOUCH MY LEFT LEG AND FOOT , THEY SOON WILL FIND OUT JUST HOW PAINFUL RSD REALLY IS.
THANK YOU FOR THE TIME AND SPACE.
SUE JAN 15,07
Linda // Jan 15, 2007 at 5:45 pm
My family had to deal with a lot when chronic pain affected me mentally. It’s hard to know that a loved one doesn’t care about life anymore. Thanks to a great therapist and much needed medication (the previous one didn’t take me seriously and recommended the lowest dose possible), I am doing great today! When a friend of ours committed suicide the full impact of what I could have done to my family really hit. You don’t want to do that to your family! Satan will fill your head with lies about being worthless, a financial burden and they would rather have the money you are costing them, etc. Don’t believe them for a minute!! Your family loves you and wants you around no matter what you’re thinking!!
Vincent // Jan 15, 2007 at 7:25 pm
I’m a parent of an adult son who has pain from RSDS. Boy, did we learn about this over it’s course. I am always learning, and admit because I don’t suffer from this pain it is sometimes hard to understand, hence sometimes difficult to support. Thanks for the post.
Sabino // Jan 15, 2007 at 8:24 pm
RSD/CRPS has been with me since 1991. Your website is one of the best sites I have visited. I have no words to express the feelings that are running through my head right now, I’m very grateful to find a doctor who understand what PAIN is 24×7. For what I read from other sufferers I’m blessed because my family has been very supported; my wife is an angel, she goes out of her way to make me feel comfortable even tho she has Rheumatoid Arthritis; another excruciating painful condtion. We both try to help each other and my sons are always willing to assist us in anything that we need. They are our right hand.
Last year I went through another C & P examination at a VA facility. The so called doctor “S” tortured me, instead of treating me with dignity and respect she pushed and grabbed my extremities to the point that my body had extreme tremors from the pain which she questioned constantly: “why are you shaking; I have never seing anyone in so much pain like you claimed to be in”.
She looked and acted like a nazi guard at a German camp during second War World. For this reason I am very happy to read your ten comments about pain. Thank you again Dr. Kannerstein, you and my Psychiatrist are real doctors. Please don’t stop advicing us. I copied your comments and posted them at my homepage for people with RSD specially Veterans.
mike t // Jan 15, 2007 at 8:48 pm
i’m so lucky for the support that i have from my family.they have attended meetings with medical and mental dr’s with me.i wanted them to have the chance to speak out on how this disease is affecting them.there are good&bad day’s.when i wake up,if i slept! it’s not if im going tp hurt it’show bad am i going to hurt.accept reality and don’t let the disease win .the pain chips a piece of you away everyday do what you can to replace it with a better piece than before.understand more,love more!ok sorry i’m getting off my soap box were all in this together.different stories same pain.good health, mt
Vincent // Jan 16, 2007 at 5:45 pm
Thanks for the site, I needed That, I’m searching for a support group in the Atlanta GA. area, I’ve had RSD for 2 & half years and think my family is taking it well but I’m not sure, I’m sending your message to my wife and will be looking forward for Friday to read some more of your input on this subject, Again Thanks.
Lynda D // Jan 16, 2007 at 8:35 pm
Boy, great reading. My family has been involved with me and all I have gone through with my RSD and still no one understands. I think it is impossible for anyone who does not have severe pain 24/7 to understand any of it. I just went to another pain clinic last week and the doctor looked at me like I was from outer space. He is a neurologist and knows of RSD but I could see he does not believe in it. What a waste of time.
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Campaipse // Aug 10, 2007 at 11:10 am
Very useful and informative blog. Recommended for all to see.
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