A person with lupus is being squished under the weight of a large heap of cash.

Financial Hardships of Lupus

I have not been able to work properly since 2005 which was when my lupus symptoms were becoming much more severe. It was an extremely challenging and upsetting time for me because I was struggling just to make it through the day doing my job as an airline representation assistant. It was a full-time role and I really enjoyed it.

It was a fairly small company and they weren't best equipped to deal with my impending health crisis. I was initially put on statutory sick pay which was less than half of my annual salary so with this in mind I was so worried about how I was going to cope financially, plus add to that the worry of my health issues that were undiagnosed at the time.

Applying for disability

As the weeks went by I was put on incapacity benefit which at the time was a benefit for people that were unable to work due to illness. This was still a relatively small sum of money to live on and the financial issues were putting a huge strain on my relationship.

I had a few people ask me if I was claiming a benefit called disability living allowance which I had heard was quite difficult to get awarded but with great determination, I figured that I would have nothing to lose by trying!

I wasn't surprised to be turned down upon my application however I learned that there was an appeals process and if I so wished I could take it further, finally ending up at a tribunal!

As you can imagine feeling so poorly is a trial in itself let alone having to face a judge who in my mind would decide if I was worthy enough to be awarded this benefit.

Looking back at the hardships

The day finally came and although I found it to be grueling having so many questions fired at me I found it to be strangely cathartic as it was a chance for me to put my story forward in my own words. It resulted in me being granted the award and the relief I felt was amazing.

This happened 12 years ago and since then it seems the UK benefits system has become even more of a nightmare for people that are sick or disabled. In 2017 the DLA benefit changed to PIP - Personal Independence Payment. Many people like myself that were claiming DLA were being refused PIP. The findings are that as many as one in three of the medical assessments that are carried out have serious flaws, according to the Freedom Of Information Act.

In my own case, I found this to be true as I requested a copy of the assessor's report and it had so many inconsistencies which made me feel annoyed.

Since my DLA ended I have attended yet another tribunal and here I am looking at a letter telling me that my latest claim has been rejected! Part of me just wants to give up trying as I'm so tired of constantly proving myself over and over again but the lupus warrior in me feels like I need to keep pushing as it's what I deserve - and so do thousands of other people that are not getting what they need. The sad fact is that many do not go to the appeal process because it's just too stressful.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.