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Andrew Scott's avatar

I didn't plan to comment on this topic, but you have come back to it and I applaud you for that. When I had a bad attack that put me in hospital for 5 and a half weeks, a number of things came to a head. Firstly, my working days were over so I was no longer the bread winner. Secondly, because of the first factor my wife left and demanded half our assets. I applied to trigger the insurance policies that had been in place for decades so, naturally, the insurance company wanted to deny my payout. In fact they accused me of lying about having MS for over 20 years and said the policy was thus void. When that was solved, the superannuation fund that held my policy tried to slash it's value by 60% on the basis that they had made a mistake calculating its worth over a decade earlier and, of course, it wasn't their fault and I should have known. In the end, I took them to the second highest court in Australia and the problem was solved. All this happened while I could barely think straight, my employer turned feral, my wife had walked out and I was trying to learn how to walk again.

As part of my health insurance (different from the other stuff) I was offered psychological counseling. I took it as I felt it would help support my legal cases, not because I believed it would benefit my soul. Throughout the rehab and the psychological process I felt like I was living in an asylum where the lunatics were in charge. No one was interested in how hard I was trying to recover, they just expected me to do things that had to be retaught. Every few days, I sat opposite the woman who kept yabbering on about 'mindfulness' and wondered how I could shut her up.

One day, the 2IC of the rehab place said "I just can't keep writing letters to your employer, you'll have to go back". I knew that meant rising at 5:15 each morning to be in the office at 7am and dealing with highly complex transactions that were now beyond me. I could barely stand at that stage.

The psychologist was my next appointment and she said something that reinforced her lack of understanding. My response was very dark and I won't repeat it. Suddenly she was very alert and it seemed the penny had dropped. In her answer she said "we want you to be safe".

That was something that no one had ever said to me. And she had articulated the key issue- I wanted to be safe and I was tired of doing it all on my own. Of course, I still do it all on my own but now I knew what I was missing. It wasn't companionship, or financial security, or a recovery, or anything else. I now knew that I wanted to be safe.

Too often, medical people and our social contacts send the message "Off you go". But go where, do what? MS brings with it a heightened sense of abandonment. There is no shared journey.

Ask that man if he feels safe enough to put down what he is carrying. If he tells you yes, he is probably lying. If he goes quiet and reflects on it, then you may have made a start.

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KaGa's avatar

When I was diagnosed, I started reading articles and became a member of several FB groups. As well as understanding that the disease is incurable, I was also struck by the isolation and loneliness of many pwMS with some level of disability. Nobody likes the sick in general. People don't want to take the time to listen to you when you're talking slowly, or go for a walk with all the logistics of a wheelchair. When you're not yet severely disabled, you live a "nuclear" life between work and home and don't really need a wider circle of contacts. And when disability makes us vulnerable, we no longer have the strength and opportunities to create social links. That's why I've taken a critical decision. I'm going to leave full-time work. The time that will be freed up, I'm going to invest in becoming a member of various associations, I haven't yet decided which ones:). For me it's an investment in the future and an attempt to prevent social isolation, which I've indeed identified as a major problem I may face.

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