I came across an amazing story this week of an ex-fibromyalgia sufferer who is planning to hike 800 miles across the state of Arizona in the United States. The 'Arizona Trail' stretches from the state's borders with Mexico and Utah and includes terrain from lowland desert to pine forests.
The woman in question is 33 year old Sirena Dufault, who after a slow recovery from
fibromyalgia, now works as a licensed massage therapist helping to ease the pain of others with the condition. She decided on this career change after originally training as an archaeologist because she says massage helped her so much when she was racked with pain.
Sirena developed fibromyalgia after being knocked down by a pickup truck when she was a student in her final year at the University of Arizona. She was able to graduate and work for a little while until things got really bad and she was eventually diagnosed with fibromyalgia eighteen months after the accident at the age of 24. At this point she took to her bed, in pain, exhausted and feeling depressed.
Sirena says she was put on a cocktail of pain medications (as many fibromyalgia patients are) and sent home to deal with it. One day she decided that she couldn't live like that indefinitely so decided to do something about it. She started to go for short walks with her dog, increasing the distance gradually over time. This process along with regular massages and other therapies resulted in her steadily regaining her lost health; at least to a degree that allows her to enjoy life again. She says she has done without any medication for the past year and a half.
When I read this story I initially thought "wow!", then I began to wonder how it would be seen by some people (I'm thinking sceptical doctors etc). I could just imagine people saying "well if she can do a hike like that this fibromyalgia can't be very serious can it!". Apparently a number of fibromyalgia patients had similar thoughts and posted less than supportive messages on various fibro message boards across the web. A few that Sirena has posted on her web site go like this:
-"It's just plain wrong. I would never donate money for such a thing, and find the whole concept very disturbing. This is a FM awareness event that I hope goes totally ignored by the media. "
-"I fear the type of awareness you would raise would bring unwanted and confusing results. We already have enough problems trying to get the public to understand our limitations impacting bare life functioning. What you are proposing risks increasing the hardships of others who have severe physical limitations far beyond yours apparently. Please be aware that your plan may not be well received by others. I do hope you will reconsider and choose a different process to create POSITIVE local awareness"
While these views are certainly understandable, personally, once I'd had a little more time to consider this I was a little ashamed that these thoughts even entered my head. Why shouldn't someone who has had the courage to battle a serious illness and seek out ways to improve her condition show the world just how far she has come.
Let's face it, if someone who had diabetes or someone who had recovered from cancer was doing the same thing everybody would be overawed by their courage and be 100% behind them, rightly seeing them as a special human being. Those that understand just how debilitating and serious an illness fibromyalgia is know that what Sirena is doing has taken immense inner strength and should be encouraged and congratulated.
On her web site Sirena says " I hated the idea that I was going to have to be on medication indefinitely", so she worked with her doctor to get off her meds. She started using physical therapies like massage and yoga along with the walking and found that once she stopped trying to hide from the pain, fearing to move in case it hurt too much, she became much more positive and empowered.
Further demonstrating her courage, although Sirena fears that her hike may trigger a flare-up of her condition she is still going ahead and hopes the media attention will help raise awareness of the suffering that fibromyalgia patients go through. She fully acknowledges that many with the condition aren't as lucky as she has been with her recovery and says she hopes her efforts will make people take notice.
Finally Sirena says: "I think that not giving up, no matter how little energy I had, or how much pain I was in, was the single most important part of my recovery."
As a recovering CFS patient I could not agree more with that sentiment with regards to "invisible illnesses". I felt sorry for myself for many years, wondering why me and how people could dismiss my suffering so easily. It was only when I became proactive, researching my condition, trying anything and everything that might help, and building this web site, that I began to feel I had a reason to live again. Positivity breeds positivity just like negativity breeds negativity. Once you have dealt with the emotional loss that these devastating conditions bring and you're able to look at things clearly again, there really is only one choice.....take positive steps, however small they may be at first, and soon enough with a little luck you'll be rolling down the road to recovery.
I for one would like to wish Sirena all the best for her courageous hike next month!
Learn more by visiting Sirena's web site at www.aztrail4fms.org
About: Matthew Hogg ("Maff")
Diagnosed with M.E./chronic fatigue syndrome aged only 11 years old and subsequently associated illnesses including irritable bowel syndrome (IBS) and multiple chemical sensitivity (MCS). Despite his own struggles he has constantly sought to educate and support others suffering from such "invisible illnesses" through his website, The Environmental Illness Resource. He fully recovered from MCS using his own approach and holds a Bachelor of Science Degree in Nutritional Health.