I have never been one to reach out for support in my life; especially when I need it the most. When I am in trouble, I do just the opposite..I isolate myself, and cut off from the people I need the most! Do you think that’s a trait in people who suffer with chronic pain and depression? When I was first misdiagnosed with MS many years ago, I walked into a support group, spent about 10 minutes, turned around and walked right out. It spooked the heck out of me. I was afraid to identify myself as a “sick” person, and did not want to ask for help. I thought I could be strong, keep going, and after all, this is an “invisible illness” so who would know? All these years I have been in a lonely boat called “I am strong and I can handle this myself“. BAD IDEA!!! What hogwash!
As I look back on all that I could have availed myself of, I feel so foolish.This one single decision has probably cost me more growth, comfort, happiness, and love than I could have imagined. I did not join another supportive resource for years. I want to make this very clear, that this was very wrong, and I now see the error of my ways. I am only telling this story in hopes that someone who is newly diagnosed or having a chronic issue with little support, will read this and connect with someone, or better yet multiple avenues and ways of support online and off. Here’s a list of the 100 best Fibromyalgia & CFS blogs to get you started.
NOBODY can support you and be there for you like people who are going through what you are. Your family and friends can only understand to a point. Unless you have felt the pain and lack of sleep, fatigue, digestive issues, depression, migraines etc of fibromyalgia, you really don’t know what we are going through. Connecting with fellow spoonies, is like finding old friends, who are your sisters and brothers. Listening to our stories and looking at us is like looking in the mirror of your own life, which can bring you tremendous comfort. Even our doctors who see chronic pain patients by the dozens every week, can’t truly relate. Conversely, you do not know what part of your own story might touch another life in just the right way to make a major difference for someone else. I think that’s something important I’ve learned recently too.
I think there’s a misconception about support groups and identifying with your condition. At least in my mind and some of the (very misguided) people I believed 20 years ago, I was warned of “identifying myself” as a sick person. I want to talk about this. There’s a big difference between letting your illness consume your identity, and your world, and accepting your condition and dealing with it honestly. I was afraid of taking ownership for my illness because I felt like I was responsible for it or something. Every time I heard myself say (back then) “I have MS” it was as if it was someone else saying it, and not me. When I heard myself say it, it was like I was saying ” I own this” and I was not willing to accept it. This was working AGAINST the wellness process..it’s called RESISTENCE. Even if I did have Multiple Sclerosis, the fight and denial I was in was causing me more stress and pain than necessary. It’s kind of ironic, something was telling me that years from then I would find out that I indeed did NOT have MS, but it was a very wrong way to go about it. The symptoms are fairly similar, and it did not change much to go through all that emotional “stuff the feelings down” crap! The whole point to this story is that I stopped myself from getting support, education, and resources. I simply went to the doctor, took the meds, and went on with life or a good 10 years. Thank God I snapped out of it!!
Eventually I learned about the wonderful world of natural health, and through that met tremendous people to support me, and for myself to support them. When I moved to Salt Lake city in 2002 I met a new doctor who diagnosed me with fibromyalgia, and I began to slowly change my thinking. Remember that you are NEVER alone. There are resources all around us to fill up our “tank” with love, comfort, education, information, and support. Sometimes we just need a listening ear..or just to vent!!
There is a private facebook group I found recently that is the perfect place to talk about anything you want as it pertains to chronic pain. It’s completely private, and cannot be viewed by the rest of facebook. Its moderator Liz Hall is a loving, compassionate, pain sufferer herself, and she welcomes you with open arms. She also runs a fabulous blog HERE. Like this PAGE or Just message Liz Hall and ask or an invite. Please tell her that I sent you.
There is love for you everywhere!
I welcome your thoughts and comments below. Do you belong to a support group or forums?
Lots of Love,