How to stop being seen as an illness?

[Lil-Miss]

Hello,

I've just gone back to work after being ill with a chest infection; I have Lupus, Lupus nephritis, interstitial lung disease, bronchiectasis. This is my second time off this year and I'm just wondering if anyone feels like they have lost their old self? It's a bit silly, but I still feel like I'm fighting myself in an attempt to be the old me but trying to accept the new me with Lupus. I was diagnosed in 2014 and I feel like Lupus is always poking at me to remind me that it's still there.

I had a spell in hospital and I think my co-workers now look at me as 'she's ill', 'she's not coping', and I fear that they only see my condition now instead of me. I know they care and are worried, but I wonder if they can try look past that? Does anyone have any ideas on how to approach this?

I was told a discussion happened when I was ill, with the Director asking if I could cope, which I get he was concerned but I am a bit worried that they may think that I am struggling when it's just my health that is affecting me. It's just a bit difficult at the moment. Just feel a bit lost.

x

[Chanpreet_Walia LUPUS UK]

Hi Lil-Miss,

Have you spoken to your co-workers about your lupus? We published a blog article on ‘lupus and work’ which has a section discussing whether to talk to your employers and colleagues about your lupus. You can read this article at lupusuk.org.uk/lupus-and-work/

We have two booklets on employment which you may benefit reading from, one booklet is for yourself and the other is for your employer:

Employee’s Guide: lupusuk.org.uk/wp-content/u...

Employer’s Guide: lupusuk.org.uk/wp-content/u...

If you would like a hard copy of these booklets, please email me at [e-mail]

Would you like someone to speak to? I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me.

Please let us know how you get on, wishing you all the best.

[Lil-Miss in reply to Chanpreet_Walia]

Hi Chanpreet,

Thanks for replying. They are aware of my condition and have been supportive, I just feel that they may see the condition more than they see me as I've been ill a few times which has worried them and let to my Director sending me home out of concern. Thank you I will read the booklets and email you for contacts.

Best wishes

[Horsewhisper]

Hi Lil-Miss, sorry to hear that you still feel like you are fighting yourself to get back to the old you, and that you think your colleagues might see more of your illness than you, the person. I too, felt a bit like this and it seemed that the disease (UCTD) was consuming me and becoming my new identity.

Of course, your colleagues will be concerned for you and want to make your work situation less stressful and your workload a bit easier for you. However, it sounds like that you are quite capable and would like to be recognised for your contribution, rather than recognised as the unwell person. This in itself is frustrating and upsetting and can add to the overall feelings of struggle; not surprising that you want to feel like your old self again rather than identify with the person that the disease has now made you feel you have become.

Regarding how to approach your colleagues with your health situation, how about this as a suggestion? Write a letter with a description of your illness and how it affects you. Note down what you are capable of doing in your job role and what other things you could be involved with. Write down any limitations (such as unable to travel more than x hours for meetings) and suggest work arounds (can conduct meetings online instead via Skype etc). Have a chat with your HR Manager (if you have one) to see if this info could be cascaded to your colleagues so that they are fully aware of your situation. If you don’t have an HR Manager, perhaps your Line Manager or MD could do this for you? Once people are informed, they will start to see you as the competent co-worker that you are rather than the person who is unwell. This approach worked for me and I wish you all the luck that it should work for you too. 🤞x

[Lil-Miss in reply to Horsewhisper]

Hi Horsewhisper,

Thanks for replying and offering a great suggestion, I will do this as it may help my co-workers to understand where I am coming from and perhaps see less of my illness and more of me. I am glad it worked for you and hope that work is going well for you.

Big hugs x