I’m writing this for people who are living with someone — or care for someone — who is suffering with a chronic pain condition, and they are having a hard time coping because they’re not sure how to help. Unless someone’s been in your place, they have no idea how challenging this can really be.
I’ve seen many marriages and partnerships end due to one of the partners living with an undertreated or mistreated chronic pain condition. Sometimes family members and significant others develop their own healthcare problems while trying to help someone they love cope with chronic pain. Family and significant others often get burned out, or they become frustrated and resentful toward the person living with chronic pain. A spouse can become just as hopeless and helpless as their family member who is suffering with pain, and may even develop a severe depression or sleep problem.
For those of you helping someone living with a chronic pain condition who don’t have a personal experience of living with chronic pain, I want to ask you to follow the steps below to see if you can develop a better understanding of what it must be like to live with chronic pain. To get the most out of the following exercise, please make sure to do it when you have the time and space where you won’t be interrupted. It’s also helpful if you journal your reactions to this as soon as you’ve completed the four steps.
Step One: Think back to a time when you hurt yourself or had a painful condition such as a surgery, toothache, broken bone, or headache, etc.
Step Two: Try to remember what that felt like and what you wanted to do to stop the pain.
Step Three: Now imagine that you have that level of pain right now and have had it for the past six months without any relief. Every day when you woke up it was there. Every night you wonder if you’ll be able to sleep because the pain is so disturbing.
Step Four: Now imagine trying to explain this to your family and friends or your healthcare provider. What would you say? What would you want from them? Please make sure write down your reactions to this brief exercise.
What kind of healthy support can friends and family provide if a loved one is undergoing chronic-pain management, experiencing significant quality-of-life problems and a decreased level of functioning? The most important thing is to understand what it must be like. If you answered the four questions above and reflected on what you learned, you should have a much better idea. Here are six additional starting points.
- Make sure that you are practicing good self-care: take time to relax, sleep, play, eat healthy, etc.
- Develop compassion and even empathy for your significant other — but never sympathy since that can cause even more problems. Remember the old saying, “Sympathy Kills”, that is often heard at Al-Anon meetings.
- Do not do things for your significant others that they can and should be doing for themselves.
- Don’t keep secrets from your significant other. This is especially true concerning medication use or abuse issues.
- Remember the three (3) Cs of Al-Anon: You didn’t Cause it, you can’t Control it, and you can’t Cure it.
- Seek out a professional with experience in pain and any coexisting problems for you and your family.
However, these are just starting points. In order to help someone else, you first must make sure to take care of yourself. You also need to be aware of the two major traps: enabling and resentment. Enabling is when you find yourself doing something for your friend or loved one that they can and should be doing for themselves.
When supporting someone living with chronic pain for long periods of time, many people are at risk for burnout. What started as loving care and support sometimes turns into a major chore, and the helper becomes angry and resentful of the person living with chronic pain. Just like many people who are living with chronic pain become isolated and depressed, many helpers also fall into these problems.
I’m currently working with a man, Joseph, who was injured at work, had to have surgery and is now on disability. He became severely depressed because he could no longer provide for his wife and young son. Joseph constantly lives with extreme guilt and shame and is grieving his lost level of functioning. It got even worse when his wife had to go to work to support the family.
So far his wife has been either unable or unwilling to come to his sessions with me. I personally invited her and even offered to see her alone. In addition, he says his son is now saying his daddy doesn’t love him anymore. When I asked Joseph why he thought his son would say that, he said because I can’t play with him like I used to. When he tries, he ends up experiencing severe pain flare-ups.
Our last few sessions have focused on ways that Joseph can demonstrate his love for his son without hurting himself. This challenge leads to the importance of developing an appropriate activity pacing plan and learning his limits. At our last session, Joseph shared that it was starting to work and he and his son are now getting close again. It’s a good thing because Joseph is now the primary caregiver for his son since his wife is working full-time.
Just like someone living with chronic pain is impacted biologically, psychologically, socially and spiritually, so to are friends and family members. When working with people — whether people in pain or their support team — I help them develop a multi-faceted plan that addesses the whole person. Unfortunately, our Western healthcare system often does not address the spiritual component at all.
I believe that for many people, spiritual healing can be an important component of a multi-faceted treatment plan. One goal of spiritual healing is to improve your well-being and quality of life, rather than to cure specific diseases or, in this case, eliminate problems obtained due to witnessing and helping someone suffering with chronic pain. Components of spiritual healing may include visualization, prayer, meditation and positive thinking.
When chronic pain and helping someone living with chronic pain impacts your body mind and spirit, the solution must address all of these areas. This takes a multi-faceted approach that is vastly improved by including a spiritual healing practitioner on your team. The ultimate goal of effective heathcare and wellbeing is to increase your quality of life on all levels.
It is important to take a look at all areas of the self: (1) the physical self; (2) the psychological (thinking and feeling) self; (3) the social/cultural aspects of self; and (4) the spiritual aspects of self. These are also the four areas that are impacted on a daily basis. If the treatment plan does not adequately address all four areas, healing will not be as effective — or it may lead to ongoing suffering.
As mentioned before, many times in the Western medicine approach, one area is not addressed at all: spirituality. I see the spiritual aspect of self as the glue that contains and nourishes all three of the other areas, and always ask my patients to explore this important part. Please see the diagram below.
I believe healing must address the whole person in order to obtain the best treatment outcomes and an effective healing plan — not to mention freedom from suffering. Part of my initial evaluation session with my patients includes scoring each of the four areas of self: Bio-Psycho-Social-Spiritual. Each area is scored on a 1-to-25-point scale and this score is your starting point. If it’s low, don’t worry we can bring it up; if it seems high, don’t get complacent because it can always come down.
I also explain some of the important components needed in each of the four areas before I ask them to give me their score. In the Biological area, I cover interventions such as diet/nutrition, sleep hygiene, activity pacing, stress management, eliminating or reducing nicotine, caffeine and sugar, etc., as well as having an effective medication management plan in place, if needed. Then I explain the scoring; if the score is 1 to 3, you should probably be hospitalized in the intensive care unit and if you score 25, you’re ready to run a triathlon.
In the Psychological area, I list examples, such as managing self-defeating defense mechanisms (AKA denial); positive thinking and feeling-management plans; therapy or counseling; daily balanced structure and the like. Here, I explain that if this score is 1 to 3, they need to be in the hospital, but this time in the psych ward. If their score 25, they’ve reached enlightenment or guru status.
Next is the Social area where I list ideas such as letting go of enabling friends/family members; setting assertive limits and boundaries; developing a healthy support system; and connecting and communicating with family and friends in a healthy manner. This time if the score is 1 to 3, they are hermits ready for a cave, and if it’s 25 they are a well-connected social butterfly.
Finally, the Spiritual area is where I list ideas such as prayer; meditation; finding peace in nature; working the steps, if in a 12-Step Program; and spiritual practice or religious practice. This time if the score is 1 to 3, they are totally cut off from their spiritual connection, and if it’s 25, they are in total harmony.
Then I have them pick a goal in their lowest-scored area and commit to a proactive plan of action that will raise that score. When that’s accomplished, I have them go to the next-lowest box and do the same thing, then complete that process for the final two areas as well. I explain the goal is to keep moving forward. This healing process is like walking up a down escalator; if you stop, you go down.
People who are willing to develop a self-care plan that includes appropriate healthcare, psychological/emotional healing, social/cultural and spiritual growth have a much better chance of obtaining freedom from suffering. Remember that this is a right, but it is also a responsibility — your responsibility.