My unconventional thoughts on email marketing

When I was a teenager I was diagnosed with school phobia.

I didn’t have any problems at school. I did well academically and I had friends. I wouldn’t say I was a model student (far from it) but I didn’t have any problems at school - other than sometimes I just felt too unwell to go. Every so often, my legs and arms stopped working. I would end up in hospital, and nobody could tell me why.

I was 13 the first time I woke up more or less paralysed. My brain was sending the messages, but my body wasn’t listening.

“My brain was sending the messages, but my body wasn’t listening.”

I spent years being tested, prodded and poked. The paralysis happened 11 times during my teenage years. Each time, I had to learn to walk again. The first time I was in hospital for about two weeks. Later stays became shorter. By the end, I knew the pattern: my body would stop working, I would rest, gradually improve, and eventually I would walk again.

Being ill was utter shite. The pain, the frustration and the emotional distress were horrific, but looking back, the worst part was not being believed. I don’t think anyone suspected multiple sclerosis. They couldn’t find a reason that explained what was happening and so they said it was school phobia. 

When something was physically wrong, at least I had something to fight. I knew what I needed to do: keep moving, keep pushing, get stronger and learn to walk again. When people told me there was nothing wrong, I had no explanation and no way to prove that it wasn’t in my head and I wasn’t faking it, so I just had to keep pushing forward.

I was told I needed to try harder. I was told there was nothing wrong with me. Being told I had school phobia, despite the fact that school itself wasn’t a problem, was awful. I knew it wasn’t school phobia, but no one would listen. My attendance was low because I was ill, not because I didn’t want to go to school. Nobody in my class wanted to sit next to me because they knew I might not be there the next day. I get it. They didn’t want to sit alone on the days I wasn’t there, but it wasn’t fun for me either.

“Nobody in my class wanted to sit next to me.”

The disbelief was damaging. It left me frustrated, dismissed and helpless. But it also meant that nobody gave me a list of restrictions. Nobody diagnosed me and so nobody told me I couldn’t do certain things. I had no reason to plan my life around an illness I didn’t know I had.

I wasn't diagnosed until I was 31.

When my legs stopped working again at 30, a few weeks after I got married and got back from honeymoon, I told my husband it was the same thing that had happened when I was a teenager. This time, at 30 rather than 13, my GP suspected MS straight away. He didn't tell me that. He just put the MRI referral through as urgent and I waited.

I had the MRI and while waiting for the results I fell pregnant. The morning after I found out I was pregnant, the neurologist phoned to say there were abnormalities on my brain. In 24 hours I'd gone from newlywed to pregnant to something wrong in my brain, but I didn’t know what.

The name came a few weeks later in the neurologist’s office. He talked around it first, listing possibilities and what each one might mean, and then he said the lesions on my brain were the kind found in patients with multiple sclerosis. I sat there waiting for the second half of the sentence. I'd had nearly 20 years of "but in your case we don't know why". It never came. He stopped talking and let the words sit there.

Those two words hung in the silence.

I could tell he still didn't believe it was MS, so I stayed in fight mode, as I'd always been. It took another year, a second MRI after my son was born, and every test pointing the same way, before it was official.

That was when it landed. There was something on the scan. There was a reason for all of it. It meant that everything I'd experienced was real.

"It meant that everything I'd experienced was real."

That was validating. I would rather not have MS, obviously. I would rather not have spent my life dealing with a condition that eventually became progressive. But being diagnosed gave me an explanation for the past. It also made me think about how different my life might have been if someone had identified it earlier.

My whole life would have been completely different. I wouldn't be with my husband. I wouldn't have my kids. I wouldn't have the life that I've got now, and I really like my life.

I wish I had been believed. I wish I hadn’t had to fight so hard to be taken seriously. I wish the physical illness had been understood instead of turned into a question about my willingness to go to school. But I’m also glad nobody told me back then that I had MS.

“I’m glad nobody told me back then that I had MS.”

If I had been diagnosed then, I might have made different choices. I might have been more cautious. I might have decided that certain things were too risky or too difficult. I might not have said yes to the things that led me on a path to the life I have now.

I don’t believe ‘everything happens for a reason’. Bad things happened that shouldn’t have happened, but I wouldn’t change it because it’s all so intertwined that I can’t separate the bad stuff from the good parts of my life. I was ill, and nobody believed me. I was also free from a diagnosis that might have defined my limits before I had the chance to live my life.