LUPUS UK
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July's Topic of the Month - Managing Finances (We want to hear your tips and experiences)

July's Topic of the Month - Managing Finances (We want to hear your tips and experiences)

Our 'Topic of the Month' discussion for July is, 'Managing Finances'.

Being diagnosed with a chronic condition like lupus will often have an impact on someone's financial situation. Whether they have to reduce their working hours, pay towards adaptations and treatment, or face higher insurance premiums.

We want to hear if you have any tips for managing financially following a diagnosis of lupus. Did you have to reduce your working hours or take early retirement? Have you claimed for any additional financial support? Have you had success in getting well-priced travel and/or life insurance?

We would like to hear all of your tips and experiences (good and bad) and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at

lupusuk.org.uk/category/blog/

All submissions will be anonymised.

14 Replies
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Well I'm a freelance writer, so I still work but do pace myself more. Some days I can't work. It inevitably impacts my finances and I worry about my capability of doing an actual job (which would be ideal at some point).

I try not to think about the future, retirement and so forth, or what things will look like in 10 years time if the disease escalates. I'm better off than many, though, since my partner works and really I only have to keep myself together to take care of our young child. We are literally keeping our fingers crossed that he doesn't get sick too.

I've decided the best insurance against loss of work is to support a more progressive government in any way I can!

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Hi Treetop33,

Thank you so much for sharing your experiences. Were you doing freelance writing before you were diagnosed or what that a change in career as a result of your health?

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Before I was diagnosed, yes. Whether it was before I was symptomatic is the million dollar question.

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I have taken 8 months unpaid leave until Dec 2018. Relaying on husband income which just covers expenses. So no shopping for me:-( lucky I have always been a good saver in the past. Now the saving has came handly. Renting out a bedroom in the house to help with expenses too. Not sure what will happen in Dec. Husband is worry I get stress at work and go loopy again.

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Hi Leave-me-alone,

Thank you for sharing your experiences. Do you feel that the leave from work will help you get more control over your health?

Have you considered whether you will return to your previous role or look for something that you may manage with better?

Are you currently claiming for Personal Independence Payments (PIP) for some additional financial assistance?

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I am not too sure what will happen after the unpaid leave ends. I was and may be still is a workaholic. But both my husband and I are very worry I will get anothet flare up because we are not in the UK. So having no work means I can freely travel. At the same time though I was a high flyer, so how I hope mentally I am not so sure in the long run:/

I haven't made any claim for help. Don't even think I will get anything. Save the stress.

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Hi Paul

Just thought this piece of information might be helpful to include in july's blog!.

A way of helping to manage finances that can be severely affected by any change of circumstances like illness is to go to citizens advice. They take a note of all income and circumstances and will run a benefits check to see what help you could be entitled to . They will help you fill the forms in too. X

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Hi misty14,

That's a really excellent tip, thank you for sharing.

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Glad to help Paul. X

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I think the most important thing is to be honest with yourself in terms of any lifestyle changes you need to make in order to ensure your health.

I had a high stress job and realized it was impacting my health and specifically began searching for a job that will not trigger flares and allow me the flexibility to deal with my lupus. I took a pay cut but found a job that lets me work from home where I can manage my stress. I sold a more expensive house and moved to something I could afford on my salary.

I have learned that it is better to do what it takes to be healthy and not resent/regret any necessary changes you need to make in your life to do that. A long life is better than a big house!

There are more flexible jobs people with lupus can function well in, but you specifically need to look for them and adjust your budget as necessary.

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Thank you for sharing your experiences and advice AimeeA.

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Hi!

Indeed. Finances and career definitely affected by Lupus.

Flare after flare you're not the same, your body isn't the same.

Some years ago I had to stop working full time because even though I was in remission it was impossible to keep a full time job rhythm. Mainly: The inconstant energy levels, nauseas, muscle pain, joint pain and lupus fog. They come and go. How do you explain this in the office? I couldn't keep my eyes opened (even when having slept well). Your body doesn't understand the strict MON-FRI 9-5pm. You will also need time for all your medical appts. A non Lupus person would have a lazy day, or a hangover some random days of the year. Not the case with Lupus. I never liked to request medical permits, nor to go home earlier. I had to cope with the symptoms. You try to do your best. And, also Lupus fog destroys your self-esteem and confidence at work. It hurts to realise that you don't remember things you knew well or that you do everyday, or you make basic/silly mistakes. Colleagues start doubting of your capacities, as well. It's frustrating to have a career, to have studied so hard and in the end your body can't make it.

So I started working freelance, with all its disadvantages. Inconstant income, don't think about getting a credit or mortgage, no company service nor landlord believe in you, people think you don't have a job you just stay at home all day, you live for saving instead of spending as you don't know when the rainy month will arrive. Clearly it's completely the opposite when you have a full time job. You get credit cards application forms in your mailbox every month and charities love you. Plus the peace of a monthly pay check. With Lupus, you depend much more on your family, relatives and friends one way or the other, even for just getting some personal references.

Lupus is a expensive illness for life. Plus, the work situation doesn't help either. I do have private insurance but it doesn't cover my Lupus. Life insurance has been denied even though I've survived this for a long time and I'm not planning on "quitting" life :) . I've used travel insurance, but no Lupus involved.

Finally, the priority has been: flexibility. You try to keep working somehow, but based on the ups and downs of your Lupus. You can work a full day, normal pace, and the next one you just can't make it out of bed.

Best of luck with your article!

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Hi Dalilatm,

Thank you for sharing your experiences. What sort of freelance work do you do now?

I'm sorry to hear that you have had difficulty getting life insurance. We have a good relationship with a financial management firm who have acted as brokers and helped some of our members get life insurance in the past. If you are interested in contacting them to see if they can help you, you can contact them through their website at nlpfm.co.uk/

You've mentioned that you have used travel insurance 'but no Lupus involved'. Is this a policy which has covered anything apart from any lupus-related costs, or did you not disclose it when you took the policy out?

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Hi Paul!

Thanks for your reply and link.

I didn't disclose it and prayed God.

Language services (Interpretation, transcription,translation, etc).

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