but you don’t look sick | yetanotherlefty

This will be a short post but I think a surprisingly necessary one.

I have a piece of advice for everyone filling in PIP and ESA forms:

If you have access to a computer YOU CAN TYPE ALL YOUR ANSWERS OUT, SAVE IT AND PRINT. The form makes it look like you have to handwrite your answers onto the space provided – which is not only difficult and painful for many of us, it also makes it difficult to retain records of what your answers were.

If at all possible, type (or have another person type) out your answers to the questions.
Put your name and National Insurance number on the top of each page.
Type “Question 1” next to the answer to question 1 and so on. Use subheadings, underlining and/or ALL CAPS to mark particularly important bits (I usually put “All references to pain are to pain levels experienced when I take all of my medications, not pain experienced if I do not take them” in all caps).
Number the pages.
Save the document and back it up (to a USB, email it to yourself, add it to a cloud backup service) then print a couple of copies when you finish it.

On the form itself, answer the tick box questions and write “See attached notes” in every write-in box.
Put the form, any photocopied evidence you are sending and the printed out answers into the envelope provided (or send it recorded delivery in the envelope of your choice). Once, I couldn’t get everything to fit in the provided envelope so I put everything in a larger envelope and taped the freepost envelope to the front of it. This worked.

Next time they send you the same form, save another copy of your answers (use “save as”and change the name to something like “ESA answers 2” or copy and paste the whole document to a new document and name it something different from the first). Look over your previous answers, add any new stuff that’s come up, take out or change anything that’s no longer relevant. Once you’re happy that it’s fully accurate and up to date, print out two copies, save a back up copy, write “see attached notes” on all of the form… You get the idea.

If you had to get another person to do any of these things for you: ADD THAT AT THE END OF YOUR ANSWERS. If you can’t write / write much / write legibly ADD THAT. Otherwise they’ll assume you can write hundreds of words and have only chosen not to.

It’s YOUR form. You don’t have to force yourself to handwrite it just because it’s a paper form. You don’t have to write inside the boxes or shorten or lengthen your answers to fit into them. You need to give the DWP assessor enough information to assess you properly and you need to do it in a way that causes minimum harm to you in the process.

I hope this helps.

I keep nearly writing this post. Because people keep telling me to “Get well soon!”. I can tell they mean it kindly and even genuinely wish that I will become well. But the thing is… I won’t. I can’t.

I have fibromyalgia. Fibromyalgia is chronic (which is medical jargon for “long term”) and it is incurable. Almost no one ever diagnosed with fibromyalgia has ever spontaneously ceased to have it (as sometimes happens to people with milder forms of me-cfs which is a related condition). Basically, once you have fibromyalgia, you have it for life. I am going to be ill (and from time to time very ill) for the rest of my life.

I’ve described fibromyalgia here before in quite a bit of detail but forgive me for briefly describing it again here. I am in pain. My muscles and joints hurt all across my body, every concious second. Being touched, even gently, is painful. I take a lot of medicine for the pain but all it can really do is lessen it, soften it – not make it stop. So it’s often not strong or unbearable pain but it’s always there. It is both physically and mentally exhausting to live with constant pain. It leaves my muscles weak and fatigued and as a result I can barely walk unaided.

I will have to take pain relief daily for the rest of my life. I will likely always need mobility aids. I will probably always need other people to help care for me.

I cannot describe this as “wellness”. I am not well. I will never be well again.

I can and do live with that. I’m usually okay or at least at peace with it. I’m happy and I love my life and I cope.

But sometimes someone is well-meaning and kind and wishes me “Get well soon!” and the weight, the heavy, solemn seriousness of being incurably ill, suddenly bears down on me.

***

I wish people “Feel better soon!” because I don’t know what’s going on with them. Maybe you might want to consider adding this phrase to your vocabulary.

Addendum:
Yes, I know there are scientists working on cures. But they’ve been researching for 50 years now without yet working out what fibromyalgia *is* so I’m not holding much hope for a cure to be discovered, trialled, found to work *and* made available on the NHS during my lifetime.