ovarian cancer

don’t disable me further

I know many fellow warriors (and, in fact many others) have to go through the process of PIP i.e. applying for disability ‘benefits’ and I wanted to share my experience with you all. As a researcher and service designer I find the process embarrassing to say the least. Not embarrassing for me – no in fact it has been soul destroying for me – but embarrassing for Scotland and the U.K. that we find this process acceptable.

Let me explain.

First of all I have issues with the words ‘benefits’. Having a weekly payment that is barely enough to cover a week worth of shopping because you are no longer able to be the primary wage earner in your house, pay your mortgage or other bills etc is not a ‘benefit’.

Secondly, the process takes months! I applied in December after not having the strength to do so for the 11 months previous because the form is over 20 pages long! I was told that a decision will be made a minimum of 16 weeks after my application. In the meantime I have to hope that we can cover our bills on one wage. What about single people? Worse still, what about single parents who are unable to work due to cancer or other conditions? They could become homeless in that time.

So what does the application process involve? First it involves filling in the giant form I’ve mentioned. This asked you to go into graphic personal detail about how your conditions affects you. You know, listing all the painful consequences that you’d rather not talk about with anyone. Like the fact you can’t do your job anymore because the drive alone leaves you so exhaust you spend the next few days on the sofa. I recall recently I drove to my work for my farewell meeting. The drive there and back was just over three hours and I was there for only two hours. The result however was two days in bed. Cronic fatigue is a massively debilitating long term side affect of chemotherapy and massive operations.

Or how about the fact that sometimes your Stoma bag becomes detached and you have to bin your clothes – a factor that now mean I always carry spare clothes with me.

I could go on…

Now I’m an extremely strong person but some of the questions asked in the form had me in tears. I understand they have to know these things but the have already received a formal, detailed description from my oncologist!

After the form had been with them for 6 weeks I received a letter to say they were sending someone to my home to assess my condition. Not an oncologist or surgeon or GP or Macmilan nurse who understands my diagnosis…no…just someone to assess me in my own home. Someone without any experience of me.

For weeks I’ve burst into tears every time I think about it. The thought of one person coming into my home and judging me on face value and then making a decision about my ability to work that potentially overides the decision of my medical team and employer! It’s frightening.

The appointment for this assessment is far from handeled in the government suggest ‘person centred manner’. It states that you must be available for the given time…

“If you are not available without good reason when the health professional visits, the decision maker at the Department for Work and Pensions is likely to disallow your claim.”

What is good reason? Is the fact that the time they’ve allocated the time I’m usually napping a good reason? Probably not. Is the fact that it’s over lunch time on Valentine’s and that I’d like to spend it with my husband because such days have extra meaning when you are living with a life threatening illness? Also probably not. So what do I do? I behave like I’m told and I wait for the two hour slot there given me, not knowing the name of the person visiting or whether they are male or female or what their training and qualifications are. In fact, whilst they know every personal detail about me and have right of access to my home at their discretion…I know not one fact about them. This is not person centred care. This is dictatorship.

I know people who read my blog may be thinking ‘you’re so active how can you be classed as disabled’ and so I think it’s important to highlight some things for those who don’t know me or who haven’t personally experienced cancer…

Some days are great. I manage some yoga and do some reading and maybe even see a friend for lunch before spending an evening cozied on the sofa with my hubby. The next day I’m shattered though. In contrast, however, some days are awful. I get up in pain, I don’t manage to eat, I’m chained to the bathroom floor for hours unable to move due to constant sickness. When I finally venture out I make it to the sofa where I spend the next few days. Or there are other days where it starts out great and I go out ready to enjoy a day and then I am suddenly rushing to a public bathroom where I embarrassingly spend hours, desperately wishing I was home. 

My life before was completely different. I traveled four hours a day to commute to my job. I worked full time as a researcher. I spend every evening either socialising or volunteering and in my ‘spare time’ I trained to be a hypnotherapist. I may not be disabled by sociable standards but I am disabled compared to me before. I hope the process will acknowledge this.

As I write this I am overwhelmed with fear. My life is being judged by someone who does not know me and who I do not know. They have so much power over how my life moves on from this moment. I can’t help but think that the process is disabling in itself.

I can only hope that the person who visits me today will recognise this.*

Love and light, Fi xx

*edit. The person who visited was compassionate and caring. Within minutes my fear vanished and I felt listened to. I have to still wait 6 weeks for a decision but in the meantime I am reassured that she cared. Whilst the process may be debilitating and lack a person-centred approach the human connection was real and supportive. Work needs to be done, however, to improve the ‘paperwork’. 

For now I just have to wait and see if the ‘system’ recognises and values the impact invisible disabilities have on people’s lives xxx

7 thoughts on “don’t disable me further”

  1. I can’t believe that you are expected to let an unknown person into your home at any time, but especially when you are vulnerable. At a minimum you should know the person’s name and have been given the opportunity to specify an agreed password!

  2. Hi Fi,
    Bless you, it is rubbish when 1 ‘fun day’ needs a chillax day the following day. The ‘invisible disability’ in some ways, presents a problem in itself.
    I have an indefinite DLA award and am waiting for the PIP application forms to drop through the letter box sometime. All I can do is tell the truth and extend an invitation to spend the day with me – no, come for a sleepover?
    It’s not enough that we have come through so much, there will always be those who over use the term ‘benefit.’ But, we are the strong ones, the honest ones who try to get through the day with dignity because our every day motto revolves around ‘it is,what it is!’ When we have given so much in our working lives, for cancer and the consequences to stay with us forever? No, it’s not a ‘benefit’ it should be renamed ‘Government Disability Trust Fund.’ None of us would be claiming it by choice – it’s not greed, it’s need!

    Please take care of you!🤗

  3. Hi Fi, Your post brought me to tears. I totally agree with all you said. And yes Pauline,it should be renamed Government Disability Trust Fund. My husband has MS. He has had it for 11 years. Every day I see the struggle and how he endures. He is still working…just. Because we are both self employed we carefully choose our days and evenings when we can work. He is fatigued a lot of the time, and tripping over getting bruised all the time. But he won’t give in to it. And that seems to work against him too. People look at him and say ‘you look so well’. It is almost like they want to see him lay in bed all the time. I want to spit. And I had to nurse him while I was going through chemotherapy for Ovarian Cancer too. So at that time I wasn’t earning anything. My husband too on DLA and we had to fight for that. He is absolutely dreading the new PIP form coming through the door. He is so fearful. And we have reams of paperwork from the Consultants, Doctors and nurses. But I guess we will be put through the same procedure, and pray that they will be compassionate and understand. Will let you know how we get on. Fingers crossed. xxx

  4. What price can be put on pain, dread, unhappiness, frustration and a broken body? DLA/PIP – what the government seem to think we have the capacity to deal with?? If I may quote the wonderful Barack Obama ‘yes we can!’ Why? Because we ARE strong warriors! Even when we are having the worst day possible? ‘Yes we can!’ Why? Because even on a bad day, we will always find that smile to reassure our loved ones that, yeah, I’m fine!’ That f.i.n.e – Freaked Out Insecure Neurotic and Emotional that the government dares to impose on us, for what?? A bit of financial support? But the ‘fine’ we share with our friends and loved ones is the fine strength that we are blessed with! This testimony I have read, along with so many others makes such difficult reading. It’s a blessing that we can share with each other the real challenge of being a warrior. Fi and yourself and your husband will today, on my 53rd birthday, be my inspiration. Sending you loads of love! Xx

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