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Can you help? – Seeking people living with chronic invisible illness

13 May 14
Megan
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A few weeks ago I was contacted by the Manchester Debt Advisory Service asking for help in reaching out to you for stories for a new campaign they are launching. I’m going to share their request today but would like to make it clear that I’m not associated with them in any way, I’m just sharing them for those who may be interested in helping them out.

Hidden Cost of Chronic Illness

The Manchester Debt Advisory Service is about to launch a campaign called the “Hidden Costs of Chronic Illness“. They want to better understand the costs and expenses associated with chronic illness so we can put together useful content for people who may be struggling financially and also suffering from ME/CFS and other chronic illnesses.

Below is the information they’ve sent through to me about their:

We’re ideally looking for people who can provide us with brief video clips (smartphone clips are absolutely fine), talking to us about the less-well-known challenges they face, especially in relation to cost. We know for example, that special dietary requirements for people with digestive disorders can be costly, as can skin care products for suffers of eczema and psoriasis.

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions.We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

It would be a great help if we could find out the following;

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

Participants can find out more by visiting the campaign page.

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

This is a UK based campaign but I feel that the information would be similar world wide. I also felt this request was timely, given that it is ME/CFS Awareness week this week.

If you are able (and happy) to, please check out their campaign and possibly share your story to help others understand.

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  1. Sarah May 13, 2014 at 9:11 pm

    I have bipolar and have had this for many decades. I’m now in my early 40s and have had the longest manic period of my life. It’s meant I’ve been unable to work since Nov-now May. I’ve got into a lot of debt because of this as I live in London and the cost of living is so high. I only get a few benefits covering rent and then £71 a wk. It’s meant I’ve had to use my credit card to get by and borrow from family to eat. The other week I was down to £9 in my bank account and that’s severely overdrawn. This all places a lot of strain on my emotional and mental health which doesn’t help with recovery. I’m making slow progress but getting there.
    I don’t tell work colleagues about it as they don’t understand and I might not get work again if I did. There is a lot of taboo around mental health issues so I prefer to keep it quiet. It’s a long silent road to getting well again. I spend most days on my own in my flat trying to keep busy but it’s tough and isolating. The radio is a good source of company and friends popping over has now dropped off. It happened in Jan-Feb but not had a visit since then. Texts and calls have also dropped off now. I feel kind of forgotten but keep going because I know I want to be well again by the Summer.
    My doctors been very good but the shrink is terrible and the service he’s offered is beyond terrible. Letting me down several times and not keeping me informed of what’s going on.
    I’m on the road to better health but it’s a long road and an expensive one to be sure. I’m about £4k in debt from it so far and increasing 🙁 This places extra strain on me which I don’t want but can’t help really. Hope this is helpful – do email me if I can help anymore.

    • Megan S May 13, 2014 at 9:12 pm

      Thank you for sharing Sarah. 🙂

    • Gemma May 13, 2014 at 9:32 pm

      Thanks you for your story Sarah, we are actually thinking of running a seperate campaign in the near future to promote awareness of mental health issues relating to debt, would you be happy for us to use your comments for this?
      Kind regards,
      Gemma

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