Guest post by Astriid Volunteer Lucy Spirit
For those with chronic illness, the scene will be familiar. It was another day dressed in greying pyjamas, curled up on the sofa with atrocious daytime TV blaring in the background and my faithful phone glued to my side for company.
As with many countless long and sometimes lonely days, I scrolled mindlessly through social media… but something changed that day. One post in particular leaped from the screen and hit home, hard. This person was talking about me.
It was a post that made me smile, cry and laugh. For the first time since diagnosis, I felt proud of who I was, and the skills that I had developed through living with a chronic illness. The fabulously funny, warm and talented Miranda Hart was talking about me – us – positive words that I knew would reach a wide audience, especially as it was during lockdown:
“We are now getting an insight into what living with the real medical, but invisible, condition of ME is like. Every day, with no end date, not knowing if health will ever return, ME sufferers live in lockdown. They can’t get outside. Imagine not being able to pop to the café, or shop or pub, let alone work or a holiday. For years on end.
They are isolated. And often not believed. They have a daily disappointment and grief of missing out on all the little joys that are so often taken for granted. They feel misunderstood. They feel like they are wasting their life, dreams and ambitions as they remain house or bedbound.
But they are not lesser. They need to be treated with respect and kindness and understanding. They still have so much to give. They are more courageous than we could know. More than most. Resilient. Tenacious. Strong. Innovative. Just because someone looks weak and tired and stuck doesn’t mean they are that as a person. It’s an illness.”Miranda Hart
Wow. Here was a well-loved, popular celebrity with a huge following speaking out for us, in a way that I certainly had never experienced before. The post piqued my curiosity, and through browsing her other posts, I found that she is a supporter of Astriid. I investigated further and was delighted to find an organisation that actively encouraged and supported people with chronic illness to return to work, and equally inspired employers to embrace this invisible pool of talented workers.
At this point I experienced a rush of conflicting emotions. Excitement was hotly followed by trepidation and a hefty dose of self-doubt. Since diagnosis, I had dreamt of returning to work and regaining purpose and joy in life. Could I really do this? Am I ready to work again? I had already been forced to nosedive spectacularly out of two volunteering commitments due to persisting symptoms – did I really want to risk a repeat of this and the feelings of hopelessness that accompanied it?
I looked at the Astriid website, and was pleased to find an article specifically addressing my question of ‘How do I know if I’m ready to work?’ The fact that this article existed gave me full confidence that Astriid completely understood my dilemma. This in turn helped me to pluck up the courage to make contact, and my journey began.
Once I was in touch with the most wonderful Candidate Co-Ordinator, Deborah Bircham, my anxieties quickly disappeared – I felt a sense of self-confidence and excitement that I hadn’t felt for years. After discussing my previous career, we distilled my skills and preferences to ensure that I go for roles that not only make the most of my innate skills, but that I also find enjoyable.
Straight away I felt comfortable enough with Deborah to pose my most concerning question: How do I know if I’m well enough to work? It was reassuring to hear that Astriid are as keen as their candidates to ensure that there is no ‘crash and burn’ scenario, as with my previous attempts at volunteering. As we talked, we realised it would be a good idea for me to keep a diary to better understand how and where any working hours would best fit alongside my life.
One of the upshots of having Generalised Anxiety Disorder is that you tend to be extremely organised. It’s a coping mechanism, but in this scenario I knew my planning skills would be beneficial. I set about creating a diary to see exactly how much time I could offer an employer or voluntary organisation per week.
My plan was as follows:
- Every day for two weeks I noted on my phone any time that I was doing an activity that could be transferred to the workplace, such as emailing. I noted the time of day, length of time and type of activity.
- Throughout the two weeks, I also noted any significant events that could affect my energy and symptoms (such as a GP appointment – always taxing!) and any flare-ups.
- I also recorded times of day when I needed to sleep or rest. It was vital that my health and self-care were prioritised over any tasks.
By the end of the two weeks, I could look back and clearly see what times of day I was active, how long for, and what type of task I could do without any flare ups, whilst taking as much rest as I needed.
It was quite an eye opener to see that some of my best times were 6am to 8am, and that I actually found researching less draining than emailing. Even better, I had a whole sparkly ten hours a week to offer an employer or voluntary organisation!
This boosted my confidence further, and since discovering my hidden potential and capacity for work, I have been confidently researching and writing weekly.
I’m looking forward to continuing my journey with Astriid, and starting to realise that in the inimitable words of Miranda herself, certain areas of my life have the potential to again become, ‘Such fun!’
Guest post by Astriid Volunteer Lucy Spirit
Here at Astriid, we match talented people with long-term illnesses with meaningful employment opportunities. We work with employers to make sure that they can meet individuals’ needs, and help candidates through all stages of their ‘work-ready’ journey. To find out more and sign up as a candidate or an employer, visit our website!