By Sarah Ann Shockley

So many caring people are anxious to help their friends, relatives, and co-workers who are living with chronic pain that they are quick to offer recommendations and words of advice. But is more advice what people in pain really need?

I would suggest, most respectfully, that it is not.

Chronic pain is a complex condition that is not easily remedied by typical treatments, supplements, or exercise routines. While we appreciate everyone’s sincere desire to help, what we require usually isn’t more advice. To support us in our healing, here’s what we would ask for:

1. Respect

Please understand that everyone in chronic pain is doing our utmost to heal. We are not malingering or making it up or exaggerating. We are not lazy, or melodramatic, or trying to get more attention by being ill. In fact, most of us understate our situation in order not to make others around us feel bad. And please respect our intelligence and tenacity. If we have been in pain for any length of time, believe me, we’ve tried most of the treatments, both alternative and traditional, that you have ever heard of. And then some.

2. A Free Pass

Just being in pain is hugely exhausting, and we are using most of our available energy and personal resources just to get by. Getting out of bed in the morning and lurching through another day may be all we can manage. The fact that we found the energy and wherewithal to make one important phone call or fill out a necessary medical form may be a major triumph for that day.

3. Understanding That We Can’t Be Normal

Most of us are sleep deprived and under a great deal of stress trying to handle work and parenting and relationships and self-care and medical demands while in pain. We don’t have any reserves left over to participate in life at normal levels. We are not being selfish or acting like victims if we have to say no to a lot of things. We are not doing this to make you angry or to get attention. Just having a conversation may take all our available energy. Imagine having pain in your body and the flu and jet lag and severe sleep deprivation all at once. It can be like that most of the time for us.

4. Allowances for Our Cylinders Not Firing

People in pain simply don’t have the brainpower that we normally would. All our available stamina is going into healing and into living with pain. There doesn’t seem to be a lot left over for our noggins to draw on. We forget things easily, we can’t find the right words sometimes, and sometimes our brains go offline for a few moments and we simply blank out. We have trouble focusing and we may not be able to make sense of complicated instructions. Actually, we may not be able to follow any instructions. Just imagine finals week at college. You know, the last day, after not sleeping all week? Remember how brain dead you felt? Some of us feel that way every day.

5. Compassion and Trust

What we really need from you is compassion, understanding and trust that we are already doing our best and to refrain from asking us to hurry up and get out of pain. We need you to not be so scared of your own pain that you refuse to allow us to experience ours or feel like we have to hide it and not speak of it. For whatever reason, we are still in it for the time being and, even if we wanted to, we can’t move out of it to make you feel better. Believe us, we certainly would if we could. We wish we could be more available to you and to our own lives, but we can’t at this time.

Instead of trying to help us by offering methods for healing, we are in need of you simply being with us, being there for us when you can, and trusting us to find our own individual path through pain. We will let you know if we need more than that. We appreciate your loving-kindness, your gentleness and your compassion most of all, and these, really, more than any words of advice, are the most healing things you can offer anyone in pain.

This article was first published on ProHealth.com on July 6, 2018 and was updated on June 13, 2021.

A native of Connecticut, Sarah Anne Shockley is a multiple award winning producer and director of educational films, including Dancing From the Inside Out, a highly acclaimed documentary on disabled dance. She holds an MBA in International Marketing and has worked in high-tech management, as a corporate trainer, and teaching undergraduate and graduate business administration. As the result of a work related injury in the Fall of 2007, Sarah contracted Thoracic Outlet Syndrome (TOS) and has lived with debilitating nerve pain since then. She has been a columnist for Pain News Network, is a regular contributor to The Mighty. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain and other books on living with pain, and currently resides in the San Francisco Bay Area.

Editor’s Note: Suzan’s tips may be especially helpful after living this past year with the pandemic.

By Suzan L. Jackson

We’ve had a tough year with a lot of unexpected crises, creating emotional stress, financial problems, and the need for fast action. Most recently, when one son was assaulted in Europe and had to return early from a study abroad program, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that 16 years of living with chronic illness has taught us how to go with the flow when things go wrong.

I have learned to expect the unexpected while living with ME/CFS myself, plus for many years having two sons with the same disease and one of them also battling tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute or couldn’t go to my book club or our whole family had to cancel a trip. It’s never fun, but you do get used to the rollercoaster life.

Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. When my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.

When we recently got that unexpected phone call from our son in Italy, of course my husband and I were very upset. With so much experience of crises under our belts, however, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to assess his progress (or lack thereof), and when it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.

Back home the next day, our son kept thanking us for acting quickly and bringing him home. We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to…but he told us that his first week there had been amazing, that he’d seen and done so many wonderful things and learned a lot.

Now, a month later, he is almost fully recovered. He can think clearly, has returned to normal activities, and his headaches are almost gone. His professor is working with him on an individual project to get credit for the course. And we are hoping that the travel insurance (we never travel without it!) will come through with reimbursement for us soon.

In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis. Here are some tips for when the unexpected happens to you:

Take time to grieve. It’s important to acknowledge and feel the raw emotions that come up when something horrible happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary.

Start moving forward. Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset at first), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.

Face one day at a time. Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today – or even just this minute. Taking things one step at a time will help you to stay calm and able to help.

Seek support. A few days into our crisis, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured, but I knew they would “get it.” And they did. I vented out all of my concerns and anxiety to our private group, and – as always – they responded with compassion and understanding. It was just what I needed. Try to find just the right source of support for your situation, whether a friend, support group, or therapist.

Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on – it’s going to be a bumpy ride!

This article was first published on ProHealth.com on August 26, 2018 and was updated on June 14, 2021.

Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for more than 20 years and also has Lyme disease. Both of her sons also got ME/CFS , but one is now fully recovered after 10 years of illness and the other was in college, still with ME/CFS plus three tick-borne infections, when this article first posted. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.

Having more than 101 ways to tackle energy-limiting chronic illness can be both a blessing and a curse. On the one hand, there is huge potential for making things better. But on the other hand, as each thing tends to make only a small difference, it can seem overwhelming to do everything that will make enough of a difference.

Wanting to see results, we can easily fall into the trap of putting lots of pressure on ourselves with thoughts like, “I won’t get better if I don’t do that,” or “I should be doing this.” The reality is that we can’t do everything, and how much we can do depends on the severity of our symptoms and our day-to-day fluctuations.

My journey to 80% recovery of ME/CFS has been based on taking one tiny step after another. Even though each step might not have seemed to make a huge difference at the time, it was extremely important in making the next step more possible. It’s so important to recognise the value of each tiny step because it will lead to you being able to take the next one!

Another thing that I’ve learned is that the order of the steps is important. There is no point wasting energy on one aspect of self-help if you are ignoring another aspect that will get in its way. Unfortunately, the sicker you are, the more unpleasant your experience, the more desperate you feel to make a difference, and this desperation can actually feed into the illness mechanism that can make all other self-help an ineffective waste of energy.

Self-Help Triage

1. Calming sympathetic nervous system activity / engaging the parasympathetic nervous system

When the sympathetic nervous system is active, it is preparing our body for action. Our energy and nutrition are lining up to deal with an impending emergency and are therefore not available for general well-being and healing. Any healing intervention we try is going to be less effective if we cannot engage our parasympathetic nervous system. Desperately trying to get better, putting pressure on ourselves to do things that might help, or worrying about what we should be doing will keep us out of the relaxed state needed for our body to send its resources to healing.

When your energy is limited, your number one self-help priority must be to stop wasting it on pressure, stress and worry. Easier said than done! But understanding the important value of being able to relax, accept, and let go of resistance and worry can help you want to build these skills. When you know that all else is pointless unless you take this step, it’s easier to let go and focus. Self-compassion is absolutely crucial for taking this step. Worrisome thoughts will not suddenly stop coming to mind; however, it’s how we deal with those thoughts that counts. If we can acknowledge the thought with compassion and understanding, we can  gently remind our self that it isn’t serving us and then choose to refocus on practising some kind of relaxation skill which will serve us better in the moment. I like to use the words “It is as it is, and that’s OK; all I need right now is to accept, let go and relax.”

2. Taking a relaxed attitude to optimising sleep

Our time asleep is when our body gets its best chance to send our resources to repair and healing. However, efforts at improving sleep will be futile without first having developed skills to calm the sympathetic nervous system. This issue can also be a bit of a Catch 22. Sleep difficulties tend to be an integral part of illness like ME/CFS, fibromyalgia and Lyme disease, and we may not be able to solve them completely with self-help or even with unsustainable medication. The worry that we can’t get any further without improving our sleep will get in the way of any potential healing that is available. My approach has been to do whatever I can to optimise my sleep and accept imperfection. I aim to reassure myself that although sleep is important, resting well is a close second best.

3. Learning new skills to be able to live within your energy envelope

We’ve all experienced the consequences of pushing past our energy limits – we crash. It’s obvious that this does nothing for our healing. However, it takes a lot of skill to learn not to do this. We have many behaviour patterns that were successful when we had lots of energy which are now dangerous. For example, pushing to get something finished even when you’re getting tired. Unlearning these kinds of automatic pilot behaviours and replacing them with ways of being that are more adaptive to present circumstance needs new skills. Without taking some time to learn these skills, we are constantly going to knock ourselves back. We also have to learn how to make wise choices about how we use our energy and how to recognise and avoid energy draining situations.

If you’re feeling overwhelmed by what you need to do to help yourself improve your health and well-being, remember that you only need to take one tiny step at a time. Each step will lead to the next being easier. But remember all other steps will be more effective if you can first learn to relax and let go, engaging your parasympathetic nervous system and allowing your body’s resources to be directed towards healing.

This article was first published on ProHealth.com on June 12, 2018 and was updated on June 7, 2021.

Julie Holliday is a holistic life coach and writer committed to helping people take back control from energy-limiting chronic illness to live a more relaxed, balanced and fulfilling life. Julie loves spending time in nature, growing her own vegetables and spends as much of her day as possible in a comfortable pair of yoga pants. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter and Facebook.