You know the drill. You are in pain and suffering, often silently. Because of your condition you are in pain quite often and talking about it can be construed as “complaining,” and after a while can fall on deaf ears. You might be in deep despair because the pain is too much. Your life as you knew it has come to a halt. Exhaustion, stress, lack of sleep, and pain. That is the life you know now.
Sure, your friends and family know there’s something wrong with you. But do they really know what you’re going through? And even so, do they really want to hear about it? Again. And after you’ve declined a few invitations because you weren’t quite feeling up to going out and being social, the invitations just stop coming.
The Silent Illness
Fibromyalgia is described as a silent illness because we often don’t look like anything is wrong. I am sure many of you have become become good, like I have, at putting on happy face and dragging your (my) sorry butt out of bed. We go to work or some other commitment, even when the energy, enthusiasm, and desire to do so just isn’t there. That doesn’t mean we aren’t hurting, it just means we weren’t hurting bad enough to stay curled up in bed.
NOTE: While the chart above humorously depicts our ability to put on a happy face, someone with a chronic illness has a pain scale more like this one to the left – off the normal charts.
Don’t Touch Me
With fibromyalgia sometimes your skin can hurt to the point that someone touching you is painful. The skin is our largest organ. “It is the sense of touch that gives us our sense of reality,” according to Bertrand Russell. It’s difficult to develop intimacy with someone when the sheer act of a hug or holding hands causes you pain. Yet it’s what the body and soul crave to survive. Everyone needs contact, interaction, companionship, and a friendly ear to listen or shoulder to cry on.
“You never really understand a person until you consider things from his point of view, until you climb inside of his skin and walk around in it.”
– Atticus Finch to Scout in To Kill A Mockingbird by Harper Lee
So not only do you suffer physically, but emotionally as well. Depression is a fairly common response for those who are limited physically by what they can do. Anxiety. Despair. And all of these things I am describing can lead to feeling alone. Loneliness. So I want to share some of my coping mechanisms.
Seven Ways to Cope
For me, learning about my condition has been instrumental in me finding what works to deal with flares. But how do you deal with the loneliness and isolation of this type of condition?
- Fibro-Blogger Directory – I have found many wonderful bloggers on chronic pain, fibromyalgia, and other conditions here. It helps to read their insights and experiences, and connect and converse on topics, even if it’s just electronically. If nothing else, it helps you realize you are far from alone in this journey and that others are going through the same thing.
- Virtual Support Groups on Facebook – There are several groups that are closed to the public, so all your friends won’t see what you’re posting. You can seek advice or a sympathetic ear, often at 2 AM when we are all wide awake. 🙂 Here’s one: FIBROYMYLAGIA, but there are many local ones that have popped up too. Finding a local group might also lead to finding some new friends and sympathetic ears.
- Twitter – Search the hashtag #fibromyalgia or #spoonie or #chronicpain to find others like you to connect with. Even @ladygaga is now making the word fibromyalgia known to all, since she halted her tour due to her chronic pain.
- Local support groups – If virtual groups aren’t your thing, search for a local group. Ask your doctor for suggestions, or see if your benefits program can offer some guidance.
- Friends and family – If you don’t want advice, ask them to just listen to your woes once in awhile, with no judgment. Sometimes we don’t want people to “fix us” as much as we want them to “hear us”. Invite someone over for a nice cup of herbal tea to catch up, or find a common interest to share and bond over. And then return the favor some time. As John Maxwell says, “Seek first to understand, then be understood.”
- Managing your condition – For me it’s all about taking care of myself. I feel worse when I have a lot of stress or activities going on or if I don’t eat right. So sleep, proper nutrition, and exercise are the best things I can do for me. I also drink a lot of water, limit my caffeine and alcohol. Keeping flares at bay keeps me out in the real world, which limits the lonely feelings.
- Think positive – Drown out those negative thoughts. Make a list of 10 things that make you smile or laugh. Watch your favorite comedy. Read the comics. Keep a gratitude journal. A positive attitude can help break the flare cycle, and maybe even attract some companionship.
Control What You Can
You have the power to change things. While physically, life may be challenging, it doesn’t always have to be emotionally challenging as well. Living with a chronic condition can lead to a prolonged sense of isolation and loneliness. But if you incorporate one or two of these coping strategies, you can surely makes strides to keeping those feelings at bay.
“You may not control all of the events that happen to you, but you can decide not to be reduced by them. ”
– Maya Angelou
Do you have other strategies you use for dealing with the loneliness of a chronic condition? Please share those things that work for you.