Six years ago, I got seriously sick with a chronic illness.
I knew I wasn't going to die, but I didn't know if I could ever work again. It was that serious.
For months I had had strong pain in my neck and right shoulder, followed by pinching ear pains and eventually daily headaches. I coped for a while on pain medications but the painkillers helped less and less. On November 25th 2010, I couldn't go to work anymore. For the next 7 months, I was unable to do my job. My brain was full of energy but my body said no.
How could this have happened to me? As an ambitious business woman I was devastated to be unable to work!
I was a managing director of a med tech company and wanted nothing more than to be able to do my job.
When nobody knows why you are sick with a chronic illness
Nobody knew what was wrong with me. I went from doctor to doctor and everybody tried to play my condition down. I knew something was seriously wrong and the doctors didn't have any answers except to send me back to work. And their reasoning was that my health insurance would not accept my condition?!
Yes, they could feel my stiff muscles when examining me. What they couldn't see was my excruciating pain. Still, they were willing to give me three different pain killers so I could cope. One neurologist even suggested this was all in my imagination!! I barely made it to my car before the tears started to flow. It felt like the health care system was against me.
I didn't get why the doctors didn't seem to want to help but I didn't give up and tried to talk to even more doctors. Because of my strong ear pain I went to an ear, throat and nose doctor (otorhinolaryngologist) without my general practitioner's (GP) knowledge.
The search for answers
The otorhinolaryngologist was the first one to take me seriously. She said there was nothing wrong with my ear but something was seriously off and she told me not go to back to work until we had this properly checked out. She referred me to her friend, a well-recognized rheumatologist at the most distinguished hospital in Zurich but I had to wait three months for the appointment. In the meantime, I did my own research.
Early January I got a surprise Skype call from a friend in the US and when he asked “How are you doing?” I told him the truth, “I feel awful and I am in horrible pain”. Shocked at my answer because normally you just reply with “I am fine” he wanted to know more. So I told him everything that had happened so far and the details of my pains.
He knew the answer: “You have repetitive strain injury (RSI)!”. As it turned out my American friend had had a very similar condition and had also been unable to work for a while. Talk about the Universe providing… when I thought nobody could help figure out what was wrong with me, a few minutes on Skype and I had at least some answers.
The importance of a second opinion
After I had been sick for 10 weeks my GP told me I had go back to work. My condition was unchanged with strong pain in my neck and right shoulder, strong headaches and pinching pain in my right ear. Despite my concerns he didn't give in and said I had to go back at least 50%.
By this time, I knew my working conditions had something to do with my sickness and I believed going back to work was the worst thing I could do. I was devastated to have a doctor who cared more for my employer than me. So, I checked online for other GPs in my area. I found another one, but my insurance did not cover him. I was able to change my insurance so I could go to any doctor I wanted and booked an appointment with the new GP.
Being heard and understood
Finally I had a doctor who took me seriously and was determined to help me. He also had no clue what was wrong with me but I told him all about RSI. Together we decided it was best to wait for proper diagnosis from the rheumatologist and while we waited I started to go to a physiotherapist three times a week. Once a week for trigger-point therapy and twice a week for a medical massage.
During the previous months I had already tried various therapies and massages at my own cost but nothing had helped. The new therapies and massages also didn't help much but it sounded like the right thing to do while we waited for the specialist. I felt a bit more hopeful that there were actually some doctors out there who wanted to help, even if they didn't know what was wrong.
Entrepreneurship is the best medicine #entrepreneurship
RSI confirmed
By the end of February I had been sick for three months and I finally had my appointment with the specialist. He took my condition very seriously and did all the tests you can possibly do, including X-Ray, MRI, bone density etc. I told him that I thought I had RSI and he said that was not a recognized condition in Switzerland (it is well-known and recognized in the US and UK).
A few weeks later I got a long report back from him with all the things that were wrong with me and in summary it was RSI, he just couldn't use that term. My GP, my physiotherapist and my trigger-point therapist now all use the term RSI for my condition. So far, my health insurance has paid everything for me, for a condition that is supposedly not recognized in this country. I'm eternally grateful for the doctors who believed me and that my basic health insurance has paid for my RSI therapy.
How I felt during this time
The worst part of my chronic illness was not knowing what was wrong with me. I was in horrible pain but psychologically it was even harder not to know what was going on. I started to avoid meeting and talking to people. It was not visible from the outside that I was sick and therefore no one knew unless I told them. At the same time I was not acting like my usual self and therefore I felt uncomfortable being around people. And I just didn't want to talk about my condition until I knew what it was. I isolated myself and only my closest family knew that something was wrong with me.
Having doctors who didn't believe me and thought I was making this up was devastating. While I continued searching for a doctor who would take me seriously, the people around me started to come up with stories of what could be wrong with me. My employer was the worst. He started to suggest I had a burn-out and just couldn't cope with the stress of working for him. He insulted me, showing that he really had no idea.
My job was really easy compared to the turnarounds and high growths I had worked on in the past. If was ever much closer to a burn-out, it was then! Even though I knew that I didn't have burn-out I started to read about burn-out and depression and even did some tests and they all came back with same results; I was the opposite of a burn-out – a bundle of positive energy despite my excruciating pain.
The problem persisted
But my employer didn't stop there, he also started to stalk me. One colleague was sent to my home a couple of times to “see how I was doing.” Later, they sent a “consultant” who could “help me”. On top of this, his lawyer sent me a harsh letter with the demand to remove and delete all information relating to my employer that I had innocently posted online, even pictures which I had taken with his permission.
The three month wait for a diagnosis, while being mobbed by my employer, was an awful experience. I started to worry about getting the mail or reading email or even receiving an SMS. At some point I had had enough and seriously considered suing my employer for harassment. I got one of the best lawyers in Switzerland on it – and got a hefty bill for the consultation. In the end I decided to take a simpler – and for my health, safer, route – and asked my GP to write my employer a letter with the request to leave me alone.
Finally having the diagnosis was only a small relief because nobody knew what to do next. I felt alone with my pain. Despite having found good doctors and therapists, I had to figure out what kind of therapy I needed to manage my chronic illness.
How another chronic illness entered my life and how entrepreneurship helps me cope
What really helped with my recovery from chronic illness
According to my rheumatologist, first I needed to quit my job. To him, it sounded like slavery to work such long hours doing such monotonous work. Secondly, he wanted to send me to a rehabilitation center for 4-6 weeks . Basically, he did not know how to help me. He felt that by sending me to a clinic, they could try all kinds of things.
I didn't have to quit my job like the doctor suggested. Shortly after the diagnosis, I was fired. In three months, the company went from regarding me as their top employee to firing me because I got sick. I was relieved. I had seen the worst of my employer. As a result, I never wanted to go back. Especially after all the harassment and back-stabbing.
The Universe had a solution… The day before I got fired I was offered a new job! I received a phone call from an acquaintance offering me the position of country manager for a software company. I told my friend that I was sick and couldn't work. He asked what was wrong and I told him that I had RSI. And then he shared that he had RSI too and had been sick for over 7 years but he could work by using voice-recognition software. The job interested me, and I discussed the details with him.
A step in the right direction
Meanwhile I tried something new – Kinesiotape. I paid a physiotherapist $10 to put the tape on my shoulder and neck area. A few hours later, I started to feel better. I couldn't believe it! After all the medications that were so hard on my gut, I had found something that helped and could get me off the medications. Finally all the walks, stretches and the visits to the physiotherapist and the trigger therapist started to work.
When I finally got the invitation to go to the rehabilitation clinic I was starting to feel better. I decided not to go to the clinic and stick to the therapy that I had found, through coincidence, worked best for me. It was still a slow recovery but the taping triggered something and helped me see the light at the end of the tunnel. I started feeling hopeful that I could eventually work full-time again, despite my chronic illness.
The price of honesty
Four months later I became the country manager for the software company. The job was ideal for me in many ways. I could work from home and had flexible working hours. The downside was that I had to drive from to time to the clients and because of my RSI this was difficult.
Every time I drove for more than 30 minutes the excruciating pain came back in my shoulder. Still I was very grateful for my job and determined to do well. After 15 months as a country manager I realized though that it didn't make sense to have a local country manager so I shared this with my employer. I basically signed my own notice with my honesty.
Now I was without a job and still sick. I now knew that I was never going to work for anyone else again. This provided the kick in the butt I needed to finally follow my dream and start my own business. I didn't know what it would be yet, but I knew I wanted to work from home, have flexible working hours, and be location-independent. After determining the lifestyle I wanted, I designed my business – and today I have a six figure business. I can work from anywhere in the world and I have international clients whom I help create their own lifestyle business.
How entrepreneurship helps me cope with my chronic illness
It's been five years and I still have RSI. I can work full-time but I have not fully recovered. It doesn't look like I will ever fully recover. This is the nature of a chronic illness. I have various constraints in my daily life because of RSI, and also due to my other illnesses which include asthma, allergy, cataract and gut sensitivity. My RSI is manageable with weekly visits to my physiotherapist and trigger-therapist but most of all because I have my own business.
The way I've set up my business allows me to live with my chronic illnesses. It allows me to visit my physiotherapist and trigger-therapist whenever I need them. This career allows me to go for a walk in the middle of the day. It allows me to sleep in if I feel I need it and all without asking someone for a permission or getting strange questions.
The only downside of having my own lifestyle business is that I have the tendency to work too hard. I'm so passionate about my business that I just cannot stop working. But at some points, my chronic illnesses flare up and remind me to take it easy. This is the hardest part for me and something I need to remind myself of every single day.
It may not be the solution for everyone with a chronic illness to become an entrepreneur. But for me, it was the best medicine.
Read my article on Huffington Post on the 12 Ways My Entrepreneurial Spirit Helps Me Cope With My Debilitating Chronic Illness
Have you had to deal with an illness while working on your business?