The Marathon of Healing from Chronic Pain: Measuring Success in Small Steps
Healing from chronic pain is a marathon. There are ups and downs along the entire journey. These fluctuations include:
- Treatments that give hope, only to be dashed;
- Your child’s mood swings;
- Pain levels that range from not-so-bad to a full flare-up;
- The unpredictability of whether or not you’ll be able to go on family outings;
- The chronic daily struggle of whether or not your child will make it to school;
- Your energy level for researching treatments and interacting with school and doctors;
- Your energy level in general, ranging from Energizer Bunny to defeated, helpless, and worn down;
- Friends that come and go from your life and your child’s life;
- The ups and downs of your relationship with your partner regarding your child—sometimes bringing you closer and sometimes tearing you apart;
- Your empathy towards your child, followed by waves of resentment or fear;
- Your relationship with your child—sometimes you feel the chronic pain has brought you and your child closer together, and other times you feel it’s responsible for your conflict; and
- Your level of sympathy towards your child in pain when she is acting out—sometimes you feel frustrated that maybe your child is just being a snarky teen.
While the unpredictability can be very exhausting, it is helpful to look for small behavioral changes. Your child is likely to insist that pain levels are very bad until they are completely better. Measuring success from what your child tells you will not be accurate.
“Watch the feet, not the lips.”
It is much more helpful to look at how they are behaving. As Dr. Zeltzer says, “Watch the feet, not the lips.” Is your child going to school a little more? Getting up out of bed a little more? Doing anything more independently? Talking to friends more? Sitting outside of their bedroom a little more? Smiling occasionally? Depending on the state that your child started in, changes may be very subtle.
I find that very often, parents do not notice changes because they are living the reality every day. Parents commonly tell me that their child is not getting better. What I have realized is that this means that their child is not all better, and they cannot see the movement forward. If I ask, “What is your child doing that he did not do a month ago,” parents can typically report some changes, even if small. Sometimes the changes are in what they do. Other times, the changes are in the amount of time between pain flare- ups.
For example, one of my clients had daily migraines. Then one day, she did not have a migraine. She got one the following day. But then soon thereafter, she went two days between migraines, then four days, and so on. It is common that the length of time between pain incidents increases.
It can happen on a smaller scale as well. For example, one of my clients with full body pain and fatigue—who spent most of her time in bed—started having small periods of the day in which she felt better. Those minutes increased over time, allowing her to move more and increase her functioning.
Handling Relapses
During this marathon, there will likely be relapses. Sometimes they occur after a child has a virus or a sprain while playing a sport. Often, they occur under periods of high stress. As difficult as it is, it is important not to panic when relapses occur.
Remind your child (and yourself!) that this time, you know what to do and have a team in place. Recovery will be much quicker because now you have a diagnosis and do not have to go doctor-shopping to figure out what is going on. You can go back to what helped in the first place. Staying calm and mindful (“This is what it is, it will get better as it did before, I can handle this”) will help it be time-limited.
Often, the relapse is an indication that your child is doing too much, is too over- programmed, or engaging in activities that cause too much stress. It is a good indication that it is time to re-evaluate whether there is a pacing issue. With practice using tools to recover, the relapses will likely slow down over time, with more time between them. I often notice that with age and maturity, the relapses tend to decrease as well.
In marathons, there are times when the runners have a lot of energy and times when they are dragging a bit. But no matter what, they are making their way towards the finish line. Even if they stop for a break, they get back on track once they have taken care of their needs. Healing from chronic pain must be measured in very small changes over a long period of time in which the child is learning skills, treating mental health challenges, and identifying stressors—such as learning challenges—that may be contributing to pain.
Take stock once a month of what your child is doing which he or she was not doing the month earlier. That may bring you some comfort to know that your child is moving forward, slowly but surely. Like I always say, slow and steady wins the race!
- Validate that it is upsetting that they cannot play sports yet, while assisting them in taking small steps towards this goal. It is helpful to guide them into pacing themselves with baby steps towards recovery as a coping skill.
- Come up with ideas together of a low energy activity your child might enjoy doing as a step towards eventually doing more.
- Explain how various modalities of treatment might help them and then let them choose which ones to start with. Assure them that if those modalities don’t work or feel helpful, they can try others.
- It is okay to say that you hope they will fully recover and that the data support that they will if they work hard and find the treatments they connect with.
- You can say that they are more likely to recover if they get to sleep at a reasonable time, do some movement, eat nutritiously, get some sun, and connect with peers.
We all want to fix our children’s difficulties and erase their woes for them. We make promises partially to make ourselves feel better because of our own anxiety that they will not recover. But ultimately, we do our children a disservice by making false promises.
