In this month’s education meeting we were pleased to hear from Elizabeth Sherlock, PhD, a clinical psychologist who joined the Bateman Horne Center in 2018. She moderates support groups for patients and caregivers.
Doctor Sherlock has a great deal of experience with ME/CFS. Her son had the illness for 20 years and died at the young age of 46. Her husband had the illness for 25 years and died at age 53. Her mother had the illness for 40 years and died in her late 70s. Drawing from this deep well of experience, Doctor Sherlock presented ways of living with an invisible chronic illness.
Invisible chronic illnesses are undoubtedly hard, and uniquely personal. While no one’s circumstances are exactly the same, most people experience chronic illness in four general steps: getting sick, being sick, coming to terms with being sick, and living well within the bounds of the illness. These four steps provide a useful framework for discussing the experience of an invisible chronic illnesses.
In her book How to be Sick, ME/CFS patient, Toni Bernhard, outlines the many challenges patients, families, and caregivers must go through when learning to handle a chronic illness. Some of these challenges include: coming to terms with a more isolated life, coping with fear about the future, weathering the relentlessness of the symptoms, navigating healthcare systems, and addressing the misunderstanding of others who aren’t chronically ill.
However, there are workable strategies for approaching these challenges. Doctor Sherlock offered the following strategies, drawn from How to be Sick, and the book, You Don’t LOOK Sick! Living Well With Invisible Chronic Illness by Joy Selma and Steve Overman:
- Get your worst fears out in the open. Some people are afraid of death; others are afraid of incapacitation or uselessness. These fears are more painful when they are kept private. On the flip side, these fears are less powerful when expressed to a trusted friend, a close family member, or even a personal journal.
- Understand the mind and body are connected. Chronic illness is not all in your head, and it’s not totally dependent on how you think about it. However, your mind will always impact how the very real symptoms of your body unfold. Because of this, reducing stressful interactions and attitudes helps people better manage their symptoms.
- Build a supportive healthcare team. Encourage your doctors to communicate with each other, and where necessary, take good notes in doctor’s visits so you can share information between doctors yourself or request a copy of the doctor’s notes when you leave. If doctors ignore your needs and perspective, give them a few visits to change their approach, but choose a different doctor if the ignoring attitudes persist.
Being sick is a challenging experience, both physically and emotionally. These strategies can help people face the challenges of chronic illness:
- Manage your pain. There are many things that may help reduce pain such as medication, massages, rest, and hot baths. Make the most of whatever helps you manage your pain.
- Don’t confuse making peace with giving up. There are ways to embrace your illness without giving up on making the most of life.
- Find your own balance. It can be hard to pace yourself to what your body needs, but the results are worth it. Choose to be around people that emotionally help, not hurt you; work smarter, not harder; listen to what your body is telling you it needs; and learn to pace yourself to what your body can handle.
- Let illness be a life teacher. Illness rarely has pleasant life lessons, but it can bring valuable wisdom all the same. Stay open to learning from your illness.
Grief and Acceptance
We live in a culture of doing. When we meet someone we ask, “What do you do?” If we can’t do, who are we? Other cultures have a culture of being. They value meditation and simply existing.
To come to terms with illnesses like ME/CFS and fibromyalgia, where the ability to do can be severely restricted, people need to move out of the mindset of valuing themselves for doing things, and into a mindset of valuing themselves for simply being.
The grief and acceptance process can be hard. It requires that you grieve for the abilities you have lost, and accept the ability to simply exist within yourself. This process can help you move into a mindset of acceptance rather than being trapped by grief.
Once people accept their grief, they can move on to living well with an invisible chronic illness. Doctor Sherlock cited the following list from You Don’t LOOK Sick! as particularly helpful to living well:
- Take care of yourself first. This includes knowing your limitations and searching for your power to do good.
- Never, never, never give up. Discouragement is part of the journey, but despair doesn’t have to be.
- Learn to be honest about how you are feeling. For example, when someone asks how you’re doing, don’t default to saying you’re “fine.”
- Enroll in the School of Whatever Works. If alternative medicines like acupuncture work for you, more power to it. The same goes with special diets, specific strategies, and so on.
- Make friends with fatigue. Set boundaries to help yourself slow down and get your needed rest. Slowing down isn’t evil.
- Live as a child. Be delighted with the little things.
- Step out of the box. Occasionally and as able, push yourself out of your comfort zone.
- Search for silver linings. Look for unexpected benefits that come your way.
- Find a way to share your gifts. You still have gifts and ways to help, and they’re worth sharing.
- Be still. Let go of expectations and problems, and just be.
Living with a chronic illness can sometimes feel unbearable. These feelings are valid; however, they don’t have to dominate how you feel. Using the strategies outlined above, people can learn to live with deep meaning.
If you are looking for more resources for living with an invisible chronic illness, we invite you to look into our online support group, run by Doctor Sherlock. People find value in both talking and just listening to these meetings.
The ME/CFS support group is held online the second Tuesday of every month; the fibromyalgia support group is held the third Tuesday of every month. To join, you must sign-up for free ahead of time.
We thank Doctor Sherlock for her time and talent in presenting strategies for living with invisible chronic illnesses. If you would like to help us continue to host these monthly education meetings, please consider donating to our organization.