June's Blog (Part 1) - Kiren's experience of working with lupus

Hi everyone. This months blog has been written by Kiren. She has shared her experiences of working with lupus. Thank you so much Kiren for taking the time to write your story for us.

I work as a Service Delivery Manager for a fast growing company. This means not only am I customer facing but accountable for the relationship with the customer internally. I was young and ambitious when I was diagnosed.

I started to feel poorly, on and off for a period of two months, with no real explanation. At one point, my manager at the time made a comment, “you’ve been to the doctors more in the last month then I have my whole life”. It wasn’t said in a concerning way, more in a way that it was considered an inconvenience. At this point I was very stressed out and sat myself down in front of my GP and said “WHAT IS WRONG WITH ME?” this led to weeks and then months of diagnosing - Eventually I was told, I have lupus.

There was a change in management during this time but nevertheless, I requested assistance from HR as I had nothing to hide and wanted to be fully transparent with what was going on. HR were brilliant; they did the right thing and brought in the resource of an Occupational therapist. I cannot stress enough how much this helped me in a very tough time in my life. I had support from someone who was independent, realistic and directional in my needs and those of the company that I worked for.

With the assistance of the OT we came to an arrangement that I was allowed flexible working. Whilst work was giving me options, I did not want to compromise on my hours, my pay and my ability to work fulltime. We agreed on there being a 45 minute widow for lateness in the morning; If I am late, I will make up the time either by staying later or working a shorter lunch break, it was on me to make it work, as it is what I wanted.

I got assigned a new manager who was so supportive and understanding. He himself had gone through a tough time coming to terms with a condition; he was able to be sympathetic to what I was going through. It took months for the meds to kick in, months to understand what was due to normal illness and what was due to lupus. To date, there are still things I can’t draw a line between.

When you work, you’re part of a team and you rely on each other. When you work with lupus, you’re part of a team and more often than not, you rely on them more. It’s a big ask working with someone that has an illness. You can’t always rely on others to appreciate what you’re going through; at the end of the day, they have their own stresses in life. It’s the ignorant ones that got me.

One day, I had a headache and I called in sick. Someone in my team complained that a headache wasn’t enough to constitute as a reason to call in sick. My “supportive” manager sat me down to tell me this. I don’t mind being questioned if it is constructive. This wasn't. This was ignorance leading to influence over judgement. I responded to this by challenging my manager and asking why I was being told about their accusations rather than them being educated on my illness. I got a swift apology for the error in judgement.

To date, I probably still have a lot of people working around me that question if I am genuine in the struggles I face at work because I work as many hours as they do. I achieve the same outcomes they do. But then I come in to work later than they do every day and where they stay behind to get things finished, I leave work because I am making up my time - It’s all about perception.

How do I cope?

•Solid support outside of work – most important. You don’t just get this. I always remember that those who love you need a helping hand to understand. This isn’t just a big impact to you; it’s a big impact to them too.

•I don’t have the stress of worrying about being in at work on time. Trust me, this sounds small but it is a big thing.

•Stay organised. Any letter I get or any reports go straight to HR for my file. Why? Why not? I have eliminated any ambiguity from the beginning.

•I don’t care what people think. I have no time for people who don’t want to know about it. On the flip side, I have all the time in the world for those who want to ask me about it, no matter what their perception is.

•I prioritised my life. I need to feel like I’m living and growing and while I can, work is important. I do something I love in a fascinating industry and I love my customers. Health comes first and everything else fits in to how I make it work for ME.

•I stayed ambitious, I didn’t stay here for a salary - I stayed to make something of my life.

What challenges do I have?

•Unsupportive management - when I needed it, my answer was HR

•Staying motivated when I’m at my worst

•Having to say no – this was something new to me

•Trying to explain when I don’t actually know myself

What helps?

•Don’t be scared

•Taking your time

•Be honest with yourself

I often ask myself, have I been fortunate?

Yes and no. Some things are what they should be, a fair work place but I strongly say this, ‘I wouldn’t be where I am if I didn’t make it work and ask the right questions’. We have rights, remember that. On a cynical note, we work for a business, it has to work for them too, so it’s not all about you, If you think that, then you aren’t being fair.

Funny thing is, I don’t want to leave and my status is not looking for work but I’m forever getting head hunted by agencies (aren’t we all because of LinkedIn?). So I thought, let me see what these people who desperately want to recruit me would say. So I took the opportunity to entertain a conversation, I let the rep sell me why they wanted me out of everyone. I said, ‘Sounds good, so I have lupus, I work full time but I have flexible hours, for me it means that I can come in late if needed, I won’t and can’t compromise on this. I asked, go find out from the employer and get back to me. ‘

Did I ever hear back? No.

I work for an amazing company that have looked after me and not held back on giving me the same opportunities as everyone else. I don’t think I’d get the same courtesy anywhere else, though I could be wrong.

To end, I would say to any one working with lupus, ask yourself, “where do I stand with….”. This applies to everything;… with working late,….with absence,... with getting help,.. .with our policy. This will help you make the decisions YOU need to make, we all know with lupus, there is already so much out of your control, take it back where you can.

If you need more information about support in the workplace for yourself or your employer, you can download or order our free employment guides from our website at lupusuk.org.uk/living-with-...

1 Reply

  • Kiren, really excellent blog, and I think inspirational in the way you've coped. Thanks for taking the time and being so open about everything!

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