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I Still Struggle to Cope With My Diagnosis, but I Won't Stop Trying

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It’s hard. That’s the first thing that comes into my mind as I sit down and try to put this onto paper. I was a “normal” person up until about two years ago. Don’t get me wrong, I’ve had health problems for the last 10 years, but they were all things that could be mended with an operation and medication. Some of the illnesses I had before the angioedema meant lifelong medication, and did cause some problems at times. But I could handle that. I still managed to work and look after my family. I still had my life.

But then one day, two years ago, I woke up and my world changed. When you first become ill, you wait for appointments with consultants and doctors, pinning your hopes on them giving you a medication that will fix you. It never occurred to me at that point that there wouldn’t be a cure for me! It was a slow realization that they couldn’t help me.

I had my first appointment to see my immunologist a few months into this starting. I remember thinking on the run up to that appointment (this was 18 months ago now) that I just needed to hang on until I saw him, and he would give me something to take it away. I left that office in floods of tears. My hopes had been dashed. He was not only very dismissive because he knew he couldn’t do much for me, but he also made me feel like it was nothing. I fell into a low mood. I just couldn’t handle this emotionally at all. I felt so poorly. I needed to get better – I mean, I’m a busy person, I don’t have time for illness! That was a tough Christmas.


I then went into the I’m-going-to-research-and-mend-myself mode. I changed everything in my life, from diet to environmental factors. That all helps for a little while, but I soon realized it didn’t matter what I did. My body was attacking me and no matter what I did, it would continue.

Then the grief cycle started: I grieved for the life I had, the life I still want and miss. Losing my job was something that really crushed me. I’d worked hard for 21 years. I started as an office clerk and had worked my way up to management, only for it all to be taken away, because no matter how hard I tried, I just couldn’t work anymore. You see “friends” disappear, and people give you empty promises. It’s a lonely world having a chronic illness, because as much as people are kind and (sometimes) say the right thing, most of the time you just feel alone. How could I expect anyone who wasn’t living this to understand? I wouldn’t have understood a few years ago. I considered myself an empathetic person, but I laugh now because I wouldn’t have had a clue.

I’m coming up to two years since being diagnosed, and I don’t feel like I’m coping emotionally at all at the moment. I have days where I can be positive and I have a lot of days where I feel angry, sad and sorry for myself. But I’m trying hard to go forward with this now. I’m trying to not let this illness define me. I want to define it! I want to be back in control of my life. I haven’t lost hope that a cure will be found, but I’ve come to the realization that being realistic is far easier on me mentally. So I will give this a bash and see what happens. I can only live in hope that I might finally accept the hand I’ve been dealt.

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Thinkstock photo via Natalia-flurno.

Originally published: May 30, 2017
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