Struggling to manage work with Lupus

[TomatoEater]

I was diagnosed with Lupus at beginning of this year. Suffered from tremendous pain everywhere and mental challenges. Had been suicidal and depressed. My physical and mental health improved slowly with treatment, time and counselling. My body has returned to a relatively good state after about 6 months.

However, since I went back to work in June, I was getting increasingly more anxious and depressed. I struggle to do the work that I used to do and couldn't believe in myself that I am capable. I'm finding everyday extremely difficult and unsure whether I could find another job ever. I'm trying really hard holding on to the job but I had been extremely anxious for over 3 months and now very depressed. Not able to make simple decisions or look after my day-to-day. In the last month, I haven't slept for more than 2, 3 hours per night which worse than when I was on high doses of steroids. In the last week, I barely slept and panicked day and night. In the last few days, I noticed that my body came up with new rashes and ulcers which hasn't happened for a long time.

I am very scared about telling my employer and that it probably means I would lost the job. In the meanwhile, I'm uncertain how long I could last like this. I couldn't decide what to do. I tried breathing and meditation but they aren't enough now that my anxiety levels kept climbing. Losing hope for the future. I'm sorry for being so depressed. It just that I can't find a different mode lately. Would appreciate any thoughts or ideas.

Thanks for listening.

[thestorm]

Hi TE, sorry to read of your struggles, conditions, and wellbeing. I and many of us here can attest to your plight. I couldn't help but respond, and offer a site that has given me much mental health. Staying emotionally well is quite a challenge, daily. Have you a journal, and do you share your words here with your GP ? Our Vagus nerve, is our flight or fight nerve. This nerve holds the key to much of what our bodies react to. Mine is always at a heightened state. It is easy to look this one up on line. You might want to check it out. Second, here is a site I mentioned I use, for mental wellness, and support. [e-mail] Seth has great help, care, and information on our mental health care. If you email him, he always responds, personally. If you sign up for his emails, they come in monthly, and they never flood your email box. I hope and pray for you, I wish you the best. Know you are strong and never alone here. Blessings, The Stormy Sunshine 🌻

[TomatoEater in reply to thestorm]

Thanks for your kind words. I am not sure I can get through this. I will try.

[baba]

Lupus UK have a downloadable booklet called "I Want to Work".

Also one with information for employers: "When an Employee has Lupus"

Both very good, also many more useful accurate informative publications from this site.

lupusuk.org.uk/publications/

[citygirl1234]

hi TomatoEater,

I really feel for you, I think many of us have been in a similar situation at some point.

I think it might be time to have a conversation with your employer and HR and disclose your diagnoses so you can benefit from the Equality Act’s provision. Before you do though you need to think carefully about how much you want to share with them and what reasonable adjustments you think could help. The Lupus UK booklet that was mentioned explains more about this.

I know it’s a scary thought but there are things that they could do that might help. If you don’t ask, things won’t change, and you may end up being forced to leave your job through no fault of your own. They cannot sack you just for having lupus, depression or anxiety. That would be illegal under the Equality Act. If you are really worried you can speak to ACAS for free employment advice - acas.org.uk/reasonable-adju... has some advice and their contact details. You don’t need to be a member of a union to call them and receive advice. (If you’re in a union, you can also speak to your union rep).

If you’re really struggling you can sign off sick for a bit - sometimes it can help to take a week or two to actually get some sleep in and recover. You don’t need a note from a doctor until you have been off for 7 days in a row. Lupus and other AI conditions are often linked to stress and a lot of us find that the more you fight a flare by burning at both ends, the worse it gets. Break the cycle before it breaks you. I hope you find some relief soon x

[TomatoEater in reply to citygirl1234]

Thank you city girl. They know about me having Lupus. But I don't have a diagnosis of depression, I don't know how long it will take me to get one. I'm in a very tricky position. Thank you still!

[citygirl1234 in reply to TomatoEater]

Have you seen anyone about the depression? A doctor (including GP), psychologist or mental health nurse can diagnose it, sometimes after one or two appointments. See mind.org.uk/information-sup...

[Treetop33]

I think (and this has been true for me too) that one of the most difficult things to learn is pacing. What is a good balance between work, socialising, fun and managing our health? Having lupus is an invitation to rethink our lives (not always easy, I know, because of finances etc.). Sometimes it means challenging ourselves as to why we keep driving ourselves into illness (not our fault, it's about wiring and early experiences often). Why we can't find good boundaries between other people's expectations and what we need. Why we fear to stand up for ourselves.

A great book to read is 'Despite Lupus', which describes the author's own experience of deprioritising work and how it gave her a new life.

I don't always get things right, but I went 'work from home' self-employed. I don't work more than three days per week. There are a whole series of options to look at to enable you to work while protecting your health. Employers hate having to hire new staff, as it's costly and risky. I am sure that they would look at things like this to enable you to continue (and if they don't, well, they are damaging your health and another workplace might be better).

Best of luck x

[TomatoEater in reply to Treetop33]

Thanks Treetop33. I'm not sure if I can sustain a 3 day week either. I have no idea how to switch industry or look for what I can do. All not helpful thoughts and actions. I might not be able to stay in the UK. Sorry for being so depressed.

[MusicalFurbaby]

It’s really tough to work while living with lupus, depression and anxiety at the same time. They can become all-consuming, making it so hard to focus on the job, even if it’s work we love! I work part-time but even struggle with that. Sometimes the brain fog is so bad I can’t string a full sentence together or do my work. The fatigue is really bad too. Plus, I live with depression, anxiety and suicidality, so I understand.

My workplace knows I live with lupus and they know it fluctuates, meaning sometimes I’m fine, but other times I go downhill very quickly. I find that they have been quite supportive, especially when I give them a heads-up eg. ‘I’m struggling today and might have to leave early.’ I feel guilty whenever I do leave early or call in sick, but I’m getting better at telling that voice of Guilt to rack off. I didn’t ask lupus to invade my life, and I don’t flare on purpose.

I know what it’s like to struggle every minute of the day. I understand that feeling of ‘I’m not sure I’m gonna make it.’ I can’t promise it’s going to get better. All I can say is I understand, and you’re not alone. I hope you feel safe enough here to be honest with us about how you’re feeling. Feel free to vent here anytime; we understand the stress of living with chronic, unpredictable disease. 🌻🌈💚