Let's start with why I didn't want to talk about the mindbody connection, stress or psychology and how it might be affecting my RSD. The reasons are both personal and societal, and it's hard to tell where one begins and the other ends. First, as with many of the people I've been getting to know online who have this disorder, I've heard the comment "It's all in your head". Doctors, acquaintances and even people I thought understood what I was going through have used that expression as an insult. The implication, then, is it isn't real. The pain has no real cause and you're just making it up. Words cannot convey how horrible the feeling is, when the pain has pushed you to a breaking point, you've cried, vomited and lost sleep because of the pain, and people say that you WANT that experience. If I didn't need help before, I sure do now. The truth is, I don't want the pain, but if I have to have the pain, I'd prefer that people believe me that the pain is real, I don't want it, and that I didn't intentionally cause it.
Societally, we have two issues. One is that pain is very poorly understood, and we've only recently begun to find ways to help treat chronic pain (pain that lasts longer than 3-6 months). RSD, of course, is even more poorly understood, and diagnosing it is very difficult. That plays into this because it allows myths to grow. It means that people don't understand that there is always a psychological component to pain. Ask a person who's just burnt her/his hand on the stove what their mood is, and I recommend that you step back because the response will not be very pleasant. Ask a clicker trainer, and they will tell you how harmful pain can be because of its psychological effects when used in the training process. Chronic pain does have psychological effects, but people often don't realize that the pain is the cause of the depression or anxiety.
The other issue in society is the stigma around psychological conditions. Depression, anxiety and other psychiatric conditions are automatically thought to be "not real" and we assume that they're easy to get over. We assume that someone with a psychological condition wants what they're dealing with. We put moral burdens on people with depression, anxiety, bipolar and other conditions which we would never put on a person with high blood pressure, high cholesterol or diabetes (although those can have their own stigmas unfortunately). We as a society need to start removing the stigma of psychology and the mind. We need to stop using psychological as a synonym for "not real".
Okay, back to my story: I've been dealing with RSD for about five years, although there was a brief remission. I dealt with the usual difficulties of trying to get someone to figure out what was wrong with me. Well meaning and not-so-well-meaning people suggested that my problems might be related to some psychological condition. I often felt like I was fighting to have my pain believed. I also noticed a scornful tone of voice when people (even medical professionals) said "Maybe it's all in your head."
Even after diagnosis, I saw how psychology was often the catch-all suggestion when there weren't explanations for a symptom, or when things weren't going well. I sat in classes, where people talked about how they didn't believe some conditions were real and that they were made up or "all in the patients' heads".
It took me a long time to accept that there really is a connection between the mind and the body. I slowly learned about how stress affects the sympathetic nervous system (which can play a huge role in RSD). I saw how relaxation could make it easier to deal with the pain, make my medications work better, help with my nausea and help me get to sleep. I took a class on relaxation and researched how relaxation could be used for pain management. I talked with a nurse when the first surgery caused that huge flare which spread my RSD, and she taught me how to use a healing light imagery after she learned I could see lights and colors. I talked with my doctor, and he helped me understand that my pain was real, but that psychological stress could be making the pain worse in many ways. I started reading blogs about chronic pain and learned that seeking help to deal with the stress of life with chronic pain wouldn't mean that my pain isn't real, it would mean that I was taking a step to help myself live better. Finally, I started having trouble with my heart, and had to leave class at one point because between it and the pain, I wasn't able to focus. And, with the help of others, I finally got it.
After setting the goal to seek help, I did so in January. I can honestly say that I'm glad I did. I've gotten support through some very stressful times where I needed the confidential support of my counselor. I've received help with formulating plans for doctor's appointments. We're addressing my anxiety. I'm learning to address thought patterns which aren't helpful, and getting help with my goals. Overall, my only regret is that I didn't ask for help sooner.
If I can be so bold, I'd like to provide some suggestions for hoow we can, together, address the hesitance to seek help with the psychological aspects of pain. It will take effort for everyone to address the barriers to getting the care we need, but I believe it is possible.
People with pain: Don't be afraid to ask for psychological support. If you decide to get help from your doctor (if you attend a multi-disciplinary pain center, for example), you could say something like this. "You know, I've been noticing that I feel (however you feel), and that sometimes when I feel that way, my pain is worse. Is there anything we can do about that?" Or, you could ask outright for a referral to a psychologist or clinical social worker. If you're nervous about that (as I was due to my anxiety), you don't have to see someone associated with your doctor. It works better for me to see a wonderful psychologist on campus because of transportation issues. She happens to be very empathetic and helpful, and that has been a very positive experience so far. It might be a good idea to authorize that they communicate with your doctor, especially if you end up working with a psychiatrist for medication treatment. And, whatever you do, make sure to be educated on what you're taking.
Friends and family: If you know someone who's dealing with psychological effects of pain (depression, anxiety, stress etc), bring it up gently. Instead of saying that you just know that the stress, depression or other problems are causing the pain, be compassionate. Explain that you know that what they're dealing with can't be easy. Believe their pain. Suggest that they get help to cope with it. But if they aren't ready to accept that yet, just be there for them. Help with practical things which might be difficult now with the pain. And be as supportive to them in dealing with the psychological effects of the pain as you can.
Doctors: The most important thing you can do is listen, and try to understand where we're coming from. Some of the most helpful things which have been done for me have been by doctors. But some of the most harmful, hurtful words spoken to me have come from doctors. I know you can't be perfect all of the time, but please believe us. When you can learn our stories and understand our challenges, then you can offer support. Beyond listening, I would suggest that when you do advise psychological help, you be clear that you believe they are in pain, that you know that the pain is really difficult to deal with and you'd like to see them get some support through all of this. When you can, explain the connections between depression, anxiety, stress and pain. When the patient knows you believe them, and want the best for them, they will find it easier to seek the help you're suggesting. Finally, make sure that they know that you are still going to support them, prescribe treatments for them and pursue pain relief options. I know I had a secret fear that if I got help with my anxiety, no one would believe my pain.
For psychologists, social workers and counselors: If your schooling was anything like what my school is like, you know how to listen, or at least know the tools to listen. You know how to help people with psychological challenges. My advice is mainly to remember that the patient in front of you might be very scared of any number of things which I've described above. When you can, learn about whatever condition or symptoms the patient has. Sometimes there are psychological treatments which can be helpful (guided imagery, relaxation, breathing, biofeedback) which can be helpful. And, when you can, educate your patient on how the mind can affect the body and vice versa.
I have been very fortunate. I've had people in my life who have patiently guided me to a place where I'm getting help to deal with the psychological effects of my pain. I can write what I've written knowing that the barriers I've described didn't have the last word. But I don't want someone else to deprive themselves of the support I've received. And I hope this helps you better understand the connections and ways in which we can be a part of the solution.