Chronic Pain and Relationships with Dr. Karl Sperber, Clinical Psychologist
Along with the physical and inconsistent pain that comes with psoriatic arthritis (PsA), getting loved ones to believe and support our pain is another frustrating challenge. It can feel impossible and weigh heavily as we manage our day-to-day lives.
Psychologists are experts in helping people manage relationships and cope with thoughts, feelings, and behaviors that accompany chronic pain, like the physical and mental pain from PsA.
Let's talk about the impact of chronic pain
Dr. Karl Sperber, Ph.D. is a clinical psychologist in Syracuse, NY. In his practice, he works with those experiencing chronic pain using multiple methods, including interventional and medical treatments, as well as a physical therapy program.
We reached out on our Psoriatic-Arthritis.com Facebook page to ask our community members what questions they have for a chronic pain psychologist. Many of you mentioned wanting to learn more about managing relationships and finding the right kind of emotional support. Dr. Sperber was kind enough to answer some of these questions.
The majority of the PsA community is searching for emotional support and understanding, especially from loved ones. What is your advice and insight into managing relationships while living with a chronic condition? Do you have any specific tips?
That’s a pretty challenging area. It can be difficult for people without chronic pain to really comprehend what it’s like. There are many things that would motivate somebody to not want to believe a sufferer or not want to believe things aren’t as bad as they are, so it can be very challenging. Sometimes, people can have hidden motivations to not want to comprehend the whole thing – not really want to comprehend what’s going on with the person with the chronic pain condition.
It’s all about communication, as long as you are selecting people who have a reasonable amount of receptivity to hear. I’ve worked with a number of people who haven’t had anybody in their social and family circle who was capable of having compassion for them, and those people had to rely on therapy and whatever support group they could find. But it’s often possible to just communicate the truth of what the experience is like.
It’s such a common thing to have a hard time asking for help. Some people fear they’re going to lose out on some of the respect or esteem that others have for them – they don’t want to be seen as handicapped. That’s a tough problem. I’ve worked with so many people who feel embarrassed about their condition when obviously it has nothing to do with anything they’ve done.
Maybe it’s the genetic roll of the dice, but it’s not linked to any kind of bad choices that we know of. So we’re speaking logically, but that’s not where people live most of the time. But there’s no real reason or justification for being embarrassed.
One of the things I try to emphasize a lot is that letting someone help can often be a gift to them. It can benefit them in a number of ways. It doesn’t necessarily take something away from them, it can be a growth experience, it can add to their own self-esteem, there are all kinds of benefits that can accrue from helping.”
Treatment and healthcare frustrations are not uncommon within the PsA community. Do you have any advice for improving relationships with doctors? How would you describe an ideal pain management plan?
I wish I had some magic advice for that. I’m going to start from the bottom up to respond to that. It is a very legitimate thing to fire your doctor if a person is feeling like they’re not getting proper attention. There may be limitations to how many doctors know a lot about a condition like psoriatic arthritis.
However, no one should have to settle for inadequate care. Especially if they try to say, "I need more of your time. Will you talk to me about this treatment or why are we doing this or not doing this?" There should be really ample communication. If a person makes the effort to get the communication going and then the doctor is unwilling or too busy, people should feel okay to move on.
Many people don’t. Many people think the doctor will be mad or upset if they know that they’ve chosen to go to somebody else. My argument is that any good doctor understands that sometimes the treatment chemistry is better with somebody else, and they don’t take it personally. If they do, then that reflects a certain problem. The way things have evolved in the healthcare system, there’s no way around it, it’s just made it necessary that people must advocate strongly for themselves.
If they have somebody who will go to appointments with them and advocate for them, then that’s fantastic, and by all means take advantage of that. It’s just my observations, but doctors have become busier and scheduling more tightly, and it can be difficult to get the proper attention. My experience is that most doctors, with just a little bit of pushing or assertiveness, will pause and listen. If that doesn’t happen, my advice is often to find somebody else to see and work with.
I think it’s just a matter of enlisting as many different team members as you can. Some of this may run into issues of insurance coverage and finances, but I’ll ignore that in order to answer this question. Naturally, you want a doctor who is attuned to you and working flexibly with you.
Sometimes, using other adjunctive providers, seeing a counselor or therapist, and trying things like acupuncture or massage do help with some of these conditions. This is in addition to the things we talked about earlier, like meditation and similar daily self-care methods. You want to cast as wide of a net as you can. Then you abandon the things that don’t seem to be working once you’ve given them a reasonable try.
I’m just thinking of a number of clients I’ve worked with who put all their eggs into one basket. They have so much respect for their doctors that they just wait for whatever treatment the doctor is doing to have results. As you know, that often can stretch out over months and years where there are numerous appointments. This leads to treatments that you have to wait months to find out if they work, so if somebody is just waiting months for the traditional medical treatment to work then it’s a lot of time that goes by when you could be doing other things that could be helpful.
For many people, chronic pain is something that the medical community can’t eliminate. So the challenge for the person is, "How good of a life can I live if I have this pain? How meaningful, how rewarding, how connected to people can I be?" That’s just as important and a part of the overall picture.
More insight from Dr. Sperber
Having a painful condition is stressful, and managing relationships is difficult, without or without chronic pain. Managing your emotions and stress can directly affect the intensity of your pain.
Psychologists can help you manage the stresses in your life related to your chronic pain. If you're interested in learning more about our conversation with Dr. Sperber, please check out these additional articles:
Preparing for a visit with a psychologist
When working with a psychologist, you can expect to discuss your physical and emotional health. The psychologist will ask about the pain you experience, where and when it occurs, and what factors may affect it. In addition, he or she will likely ask you to discuss any worries or stresses, including those related to your pain.
What questions would you like to ask a chronic pain psychologist about coping through the many challenges of PsA? Is therapy a part of your treatment journey? Awareness can validate many others. Please share in the comments below.
Others usually confuse my psoriatic arthritis with...