As many of you know, in June 2014 I had a psychotic breakdown and became seriously and dangerously ill. I remained very unwell for a further two years, spending time in hospital and under the home treatment team. I was finally diagnosed with schizoaffective disorder, but it took a while to get the symptoms fully under control. The acutely ill period was extremely bleak and once I emerged from it, I found that my life had changed.
It's the time of year to reflect on what has been and what is coming up, so here are a few of my thoughts on what's changed during the last five years and most importantly, what I've learned.
We are not what we do for a living.
Before I became ill, I'd been employed full time, retrained in my chosen career and studied for a PhD. Suddenly all of this was gone and along with it, a part of my identity. If I couldn't work or study, who was I? I began the lengthy task of reconstructing myself. It's a process that's still ongoing and I'll admit it's been a challenge, but one thing that has always struck me has been the reactions of other people when I tell them I don't work.
Because I 'look well' and am obviously of working age, people tend to assume I'm employed or similar. Just a couple of weeks ago, I was at the doctors for a blood test and the nurse asked me cheerily 'are you back off to work now?' I wish I always had a suitable response up my sleeve for moments like these, but I rarely do, so I spluttered something about not being in work. My immediate reaction is usually to feel guilty when I say this, as though I *should* have a job. People are generally fine about it, it's me who struggles. The funny thing is, my respect for others has never been based on their employment status, it's just that it's taken a long time for me to be able to apply this to myself. Thankfully, I think I'm finally getting there.
Not everyone will understand, but those who do are worth their weight in gold.
Not everyone who was with me at the start of my journey is still with me now. The painful reality is that being ill has cost me some relationships. Sometimes this has been because I haven't been well enough to put in the necessary effort and people have drifted away. Occasionally it's been because my behaviour when I was ill has put people off. There are probably other reasons too, but the reality is that my circle is smaller now than it was five years ago. I've realised that's ok. I've learned to accept that people will probably come and go. I'm keen to appreciate the relationships I have, invest in them and enjoy them.
I may be doing ok, but I'm not 'better.'
One of the most difficult things I've had to face is that I'll probably never be better. That doesn't mean I won't have good times, but I may never be completely symptom free. Relapse is only ever a few poor nights' sleep or a stressful time away. I have to be really vigilant in order to stay well. I no longer drink, burn the candle at both ends or do too much socially because experience has shown me that these things are likely to make me unwell again. It's made me a bit boring, but the alternative is so unpleasant that it's worth it. Even taking all these precautions, my wellbeing is not guaranteed because of life's tendency to chuck things at us. I just have to take each day as it comes and do my best to enjoy it.
I've learned to do what I can when I can.
Because being well isn't guaranteed, I try to make hay while the sun shines. My family life, friendships, volunteering and social life are all important to me, but so is my health. I've learned to say no, had to change my plans and been forced to cancel things at short notice so I don't overstretch myself and become ill again. I don't like messing people around, so I try not to commit until I'm really confident that I can make it. When I'm well, I enjoy everything I used to but I've learned to pace myself better. Pacing myself and building in rest days has been a godsend.
I can't 100% commit to things in the future.
I know what it's like to have to plan an event in advance, it's a right old pain in the rear when people don't let you know one way or the other. Unfortunately I've become one of these people! I tend to accept invitations with a 'probably' and an explanation that I'll be there if my health permits. I dislike doing this, but it's only fair. The most difficult thing was giving myself permission to say no to things I'd love to attend, but that I know are too much. It's rubbish having to say no, but it's better than letting someone down at the last minute.
On a personal level, my inability to commit has wreaked havoc with my career plans. I've recently started voluntary work and it's great. Eventually I'd love to turn what I do into paid work, but I've no idea whether this will ever be possible. Getting a job isn't the difficult part, it's keeping a job that I struggle with. We'll just have to see what happens on this front.
Serious illness has changed me for the better.
This might sound like a strange thing to say, but it's true. I'm more patient, more compassionate and more empathic as a result of having had the stuffing knocked out of me. Other people's choices don't bother me in the way they used to as I understand we are all doing our best to get by. I'm still me, but I think I'm a nicer, kinder version of me.
