Why Shared Recovery Stories are Vital

Learning from those who have come before, and bringing back hope

Lilian Sjøberg

Jan 25, 2024

Introduction

When I first decided that I could and would use the coaching skills I had acquired to help people with chronic diseases, I first did a big search to find people who had reduced their symptoms, recovered or healed from the major chronic illnesses, and studied what each had done to get better.

I found various recovery stories scattered around the web. At first, I could not see the commonalities, and there seemed to be as many individual pathways to recovery as there were stories. Then I began to see the patterns, and I realized that they all involved strategies for stress reduction, trauma healing, and an unshakeable hope and faith that they could recover. I found that there were 4 basic components common in these stories, which became the core part of my HOPE-shortcut course.

HOPE was the first important step to install. That is why I record people with serious illnesses who have more or less recovered and share their stories + people who tell how my courses, group calls, and therapy changed their understanding of their disease and what they can do going forward.

Recently, I recorded a talk with Anne Hellevik, a person with a Parkinson’s diagnosis label, who followed a similar initial pathway of searching out the people who had gone before, and used this information to begin her own successful recovery. Here is the first part of our conversation.

Transcript

Lilian: I'm sitting here with Anne Hellevik and you have a story in regard to Parkinson's. Maybe start to present your story your Parkinson's story, from maybe a little before diagnosis - why did you go to the doctor?

Anne: Yes. I have had symptoms of Parkinson's for 10 years, but in the beginning, I just ignored them. And I was a little bit shaking sometimes, and a bit stiff but I didn't care. I mean, I just continued as usual with my life.

Then five years ago, I suddenly became much worse. I limped when I walked, and my arms didn't swing, and I had a lot of strange symptoms, but I ignored them anyway. Then, one day before Christmas I was packing a Christmas gift and I cut myself in the finger. I was bleeding a lot, so I had to go to the emergency, but then the doctor said “You have to go immediately Monday morning to your health care center because either you have MS or Parkinson's.”

He said we see that. It was so obvious to them because I was shaking. I lay down on the bed and I was shaking so much in my whole body. So it was crazy. I was afraid of the wound as well. So it was a shock for me. It was a shock for me then.

And then I visit a lot of doctors in the spring of 2019. And it was obvious that it was Parkinson's, nothing to discuss. And in April then, I went to my neurologist, and she said, ”yes you have Parkinson's and you're going to be much worse soon,” and then I got into a real shock. I was shocked.

Lilian: Did you get a DAT scan [a scan which indirectly measures dopamine levels in the brain]?

Anne: Yes I did. I had a DAT scan and it was a very severe loss of dopamine on both sides of the brain, so it was very clear that I had Parkinson's, and I had it for a while as well, but I got into this shock, and I was laying in my bed, and I was freezing and I was shaking. I couldn't sleep. I was in a terrible condition and all the symptoms got worse. I thought “I can't stand this. I can't stand this. It's impossible for me to live on.” I mean, I didn't want it.

I couldn't live with having Parkinson's and getting worse.

So I decided to see, to Google around and see if there were any possibilities to get better, because the doctor said “it's not going to get better”, but I thought there could be a small chance that there are some things you can do. Then I googled around, and I noticed that you can't google on "get better from Parkinson," you can just get "you're not going to get better from Parkinson", that's the only thing you get when you google. So you have to go down, deep down into Google to see.

Then I found some people who had some theories about getting better, actually getting better from Parkinson's. And I studied them. Perhaps there were five, or six people. They have written books. I read all the books.

I looked at their internet pages. I collected all the data, it was like my only chance, so I had to do it. I was so determined to find something that I could do and perhaps have some hope of getting better because otherwise, I didn't want to continue anymore.

Lilian: Did you think about ending your own life?

Anne: Yes actually, it was life and death. It was on life and death for me. I never felt that before, it was like all the senses were sharpened. I mean, you have to survive it. It was I wanted so much to survive and be healthy. I feel it in my whole body and if there was a chance, I’ll do whatever I need to do.

Lilian: You made a promise to yourself to do something or die.

Anne: I thought I'll try out this. I realized that it's a very difficult sickness, Parkinson's, and there are no cure and that makes it more difficult to solve.

I mean, but I thought “I give it two years because it's so difficult” otherwise, I said perhaps some months, but two years must be enough, and if I get just a little bit better, then I know it's working and then I can continue, because then I can take the decision after two years. If I'm going to get worse, then I know what to do. I can't live with it.

Lilian: But hopefully you didn't get to that. How much time did you need to search on the internet, was it hours?

Anne: I used days - I could not sleep anyway.

And then I did a list of 15 things I'm going to do and that came very instinctively. It was very obvious to me that I must do this by myself. But I also wanted help from my family and so on. I needed support. I understand that also. I told all my relatives that this was very important for me.

They might have to support me, but I'm going to do this by myself. And I realized there was a possibility that my inner stress in my life had got me sick, actually.

I studied some books and home pages and got the grip of it that I must observe my own thoughts and be more positive, and I must really believe that I can be healthy again. That's the tricky part, I think, because when you're ill, you have to be very critical of yourself and understand that you really need a big change. A life change, actually. So I started immediately.

Lilian: Was it something you read on these pages?

Anne: Yes. And also it felt like it was the most important part, I think, because I could observe that when I was most afraid for the future and so on, then my Parkinson's symptoms got worse.

So I understood that I must calm down a lot and I must have faith, that I too could get better.

Can you remember a time in your life when you were absolutely certain that you could solve a problem, whatever it was.