8 Ways You Can Support Your Friends With ME and Fibromyalgia
I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and I am writing this post in honor of International ME/CFS and Fibromyalgia Awareness Day, this Saturday, May 12th, 2018.
Kudos to all those surviving and doing their best whilst living with these diseases, and to the caregivers and loved ones who love and support them!
These diseases are disabling, invisible and poorly understood. Often the struggles of those who live with them is disenfranchised and goes unacknowledged and invalidated.
Here’s a brief overview of the diseases:
ME/CFS is a complex neurological, immune and inflammatory disease with myriad symptoms – mainly fatigue, muscle and joint pain, brain fog, headaches, sensory sensitivity, sleep problems, digestive problems, etc. These symptoms are all made worse by physical, mental or emotional exertion. This is called post-exertional malaise (PEM) and is the hallmark and major symptom. ME/CFS is also called systemic exertion intolerance disease. Relapses, crashes and flares are part of the reality of this disease and severity ranges from mild to very severe. Some people are even bedbound because of it.
Fibromyalgia is a complex chronic pain disease. Similar symptom profile to ME/CFS above, but in addition, pain is the major symptom – muscle pain, joint pain, stiffness and burning nerve pain, which can be localized or widespread. Flares are part of the reality of this disease.
These diseases can affect anyone, are more common than people think, and you are bound to meet someone with one of them in your life.
Here are eight things you can do to help support people living with these diseases:
1. Acknowledge and get over your own discomfort with pain.
Sure, it might be overwhelming for you to see someone sick, and pain might be awkward for you, but it’s more overwhelming for them. It’s their life 24/7, so acknowledge your need to grow, sort yourself out and be there for them!
2. Ignorance wounds, so please take time to learn about these diseases!
No, we are not feeling well today, even though we may appear smiley and normal on the outside. No, we are not having to cancel on you again because we “can’t be bothered” or we are too lazy. No, we are not off of work because we want a leisurely life! No, we are not sleeping in because we are “so lucky.” And, no, multivitamins or antidepressants won’t fix these diseases.
Google some articles and information. Watch “Unrest,” look up YouTube clips, read articles on TheMighty.com. But more importantly, please take the time to sit down and ask the person you know questions, and learn about their experiences of their disease. What is it like for them? What is like to be them? What does it mean to them?
We live in the age of accessible information – it’s difficult to continually plead ignorance now.
Learning about the reality of the other helps to grow understanding and compassion instead of assumptions and judgment.
3. Ask how you can support them, and please keep asking.
Ask in-person, drop by, or send a text or email. Follow up, be thoughtful and be consistent. Don’t wait for them to come to you, reach out to them! It will mean the world.
4. Remember them.
Remember that as you enthusiastically move forward and go about your busy able-bodied and able-minded life. Often people take their health, freedom, and ability to plan and dream of the future for granted. Yet, there are others in this world who are literally missing from their lives, whose daily lives are burdened by sickness, and who have lost their dreams.
5. Validate their disease, feelings, and experiences as real and important.
Validation makes people feel seen, heard, and valued. It is incredibly healing.
People with these conditions need to process an immense amount of loss. They struggle with sadness, despair, grief, loss of identity, loss of self-esteem, anxiety, shame and anger. Support them! Give their pain a platform and a voice.
6. Honor them.
Encourage and highlight how freakin’ incredible and amazing they are for how they continue – against many odds – to bravely keep going, keep loving, and keep trying.
7. Donate to research, fundraisers, a local support organization for those living with this condition.
8. Educate and advocate whenever you find an opportunity!
Advocating for what is right and standing against discrimination (based on race, ethnicity, ability, age, gender, sexual orientation, religion, socioeconomic status) in every area of life is a responsibility that belongs to us all. If you hear or pick up that others don’t understand these diseases, please stand up and educate them. If your loved one needs an advocate when they visit the doctor, please go with them. People living with these conditions are often too sick to stand up for themselves and their rights; it’s great when able-bodied people can step in and speak up!
I urge you to please remember those who bravely continue to fight everyday with these diseases. Please lend your strength and health to helping them as they seek to try to rebuild and make sense and meaning of their lives now.
Let’s get better at supporting one another and reaching out. In doing so, we can also reduce the social and emotional isolation that is rampant in our society. Win-win!
Getty Image by Paul Bradbury