Susanne Aichele wants you to know that a disease is not a life sentence, and that you have the power to heal yourself.
It’s a lesson she has learned the hard way.
She has suffered from fibromyalgia since she was 18, and chronic fatigue for the last eight years.
The two conditions sometimes come hand-in-hand.
They also share the commonality of being a sort of non-diagnosis – a label that doctor’s assign when they can’t figure out what’s wrong with you.
Fibromyalgia refers to widespread and persistent body pain. Aichele called hers joint pain, but it was also inexplicably in her forehead, she said.
She learned to live with the pain and it never slowed her down.
“I worked all my life. I grew up on a farm, and since I can remember I worked and had chores to do.
“I used to do mining exploration, running up and down mountains with heavy backpacks, and I was in pretty good shape.”
Pain never slowed her down, that is, until a simple cold hit her in October 2005 – a cold that took eight years to recover from.
The doctors called it chronic fatigue, but again, that label only indicated that they didn’t have a better answer.
“A good doctor goes and they rule out all the other things that it could be, like Lyme disease, and they do blood tests that you’re not deficient in anything,” said Aichele. “And it’s kind of when they can’t find anything and you’re still feeling tired all the time, then they consider it chronic fatigue.”
The doctors couldn’t explain it, and friends couldn’t understand either, said Aichele.
She herself has trouble putting words to her experience.
“I would never have been able to comprehend that if I hadn’t experienced it.”
She describes her ordeal using an abundance of analogies.
It was like “being a butterfly pinned to the wall.”
Doing the dishes felt like climbing “a giant mountain.”
The small tasks of everyday life were “like running a marathon every day.”
Even the brain stops working the way it once did, “like a fog.”
“It’s like a dead battery. You put it on the charger and it looks good, it looks like it’s charged, and you take it off the charger and it has no power. That’s exactly how I felt.”
Even now, reflecting back on the worst days, it’s easy to forget how bad it really was, she said.
And through it all, there was no help.
“For me, the scary thing is that there were people who were really close to me, and they still don’t understand. There’s very few people that do understand.”
Western medicine didn’t have an answer for her, except to experiment with antidepressants or other drugs that might help, might hurt, and almost always come with a long list of side effects, she said.
Aichele was not interested in that, so instead she turned to alternative healing practices.
Learning energy healing techniques, like reiki, was key to her eventual recovery, she said.
But forcing yourself to do the things that bring you healing is difficult when you barely have energy to get out of bed.
It’s harder still when you can’t hold down a job and have little social or financial support.
“If you don’t have work and you don’t qualify for EI, then there’s social assistance. And if you have a disability so you can’t work, you get $250 extra. But you know what that means? Nothing. You can’t live the lifestyle you have to live. You have to eat white flour, you can’t afford anything that’s healthy. Alternative health treatment, that stuff that helps – acupuncture and different things like energy treatments and herbs – you can’t afford any of that, really.”
And the things that used to bring Aichele joy, like being out in the wilderness, seemed out of reach.
“I ended up driving up the mountains. I had asked a friend to take me out in a boat but he never did, not understanding.”
Maybe people choose to see the disease as a choice or “all in the head” because it’s scary to think that it could happen to them, said Aichele.
“I wasn’t one of the people who drank too much, smoked, hung out on the couch and ate all the wrong foods. I lived a healthy lifestyle. I was trying to be healthy and did healthy things, stayed in shape and all that. I think maybe that’s what scares people.”
Up until recently, Aichele would have been grateful for a real diagnosis – something to point to as the source of her problems – and a pill that she could simply pop to make it all go away, she said.
Recent research has indeed found a potential biological cause for fibromyalgia, found in nerves under the skin.
That news certainly comes as a comfort to some sufferers who have long been told that their pain lives only in their head.
But Aichele now says she sees the lack of an easy cure as one of the great blessings of her disease, or challenge, as she prefers to call it.
It gave her the space to learn about the healing that comes from within.
“I learned that I have the power to heal myself. I wasn’t able to give my power away any more because there was no help outside.
“It’s a bit like trying to get to the top of a mountain. You can take a helicopter and fly up or hike up. When you hike up you build endurance, strength and skill. Flying seems more fun at the time but what do you gain besides elevation? If you want to get up the next mountain you need to hire a chopper again.
“If life throws me a curveball I have learned to deal with it. I can teach people skills to deal with challenges and make the world a better place.”
That’s exactly what she intends to do.
Aichele wants to start a support group to help others suffering from fibromyalgia, chronic fatigue and related illnesses.
She wants to help others to learn from the journey that she has been on.
She would also like to see reforms to the health-care system.
“My dream would be that we actually have a real health system and not a disease system. A lot of times medications are not getting at the cause of the problem.”
In her dream, doctors would work collaboratively with alternative healing practitioners.
There would be more of a focus on nutrition as a route towards health.
People would take more time to pay attention to their bodies, and rest when they need rest.
Doctors would not have the monopoly on treatment and people could take responsibility for their own wellness.
“In the end I think that that’s what has to happen if we want to survive and be well.”
Aichele herself is doing much better.
Although she still has to be careful to not overexert herself, she can do many of the things she used to do and her pain is almost completely gone.
“Today is a good day. I can get stuff done. Tomorrow, maybe I get less done, but I can make a living now. That’s huge. To be able to work full-time is huge for me. It used to be taken for granted.”
Anyone interested in Aichele’s support group can contact her at firstname.lastname@example.org.
Contact Jacqueline Ronson at