Lost my disability benefits... from a TMS perspective, do I fight for them back?

[eluna]

Hi, so I'm from the UK and I've recently had my PIP (Personal Independent Payment) removed. I can try to appeal this decision but from a TMS perspective, I'm unsure if it's the right thing to do and I thought I'd come here for some advice.

For those who don't know about PIP, it's a disability benefit (called welfare in the US?) in the UK and it's extremely tough to get. I recently went through a review process which has been ongoing for nearly a year and it has caused me so much stress and anxiety. I've been having a very tough year so far with external stresses so when I heard that my payments were being stopped, I just felt like giving up with life.

However, when I was in a better mental place, I had decided that I would accept whatever decision was made and trust the universe. (I can imagine the universe is looking down at me like "tf" after I had a meltdown and started swearing at it lol.)

I feel like being on this benefit has actually started to hinder my recovery. I have made big steps in decreasing my pain and improving my mobility (I've gone from being unable to walk at all to walking without aids), but I find with each milestone, my anxiety is working in overdrive, worrying about if I'm even allowed to make this progress whilst receiving this benefit. I keep stopping myself from trying to fully live my life away from TMS because I'm worried about what this means for the benefit.

Being on this benefit is also keeping me in the mindset that I'm sick, disabled and vulnerable. And I mean absolutely no disrespect to those who are but I'm so tired of feeling that way. Especially as I'm increasingly experiencing moments where I feel strong, energised and confident. Plus, I have TMS - I am NOT sick, disabled or vulnerable. I have the power to heal myself... but it feels like being on this benefit is actually stifling that.

Lastly, I have also been out-of-work for nearly four years. I absolutely don't regret that, I needed that time off for various reasons. However, I've reached the point where I want to slowly go back into work again. In fact, I feel excited about the ideas I have and I really want to become financially independent. Being on benefits feels incredibly anxiety-inducing.

Everyone is telling me to appeal and I can see their point - the assessor actually lied about the information I gave them in the review which isn't fair. I shouldn't let the government push me around and it's a very nasty thing they've been doing to a lot of disabled people. Also, I obviously don't want to be out of money. I am receiving another benefit which is rather different to PIP. It's not a great amount but enough to survive on if I have a very strict budget. I have a small amount of savings which would last me around 2-3 months if I were to live off that alone (which I don't have to right now). The work I want to do is freelance which I know is risky. But this whole TMS experience has taught me what I want in life and what just creates more repressed anger.

I want to trust myself, I want to trust my mindbody and believe that I can do this, even if it will be hard for a while. Everyone is telling me to appeal and maybe I'm just leaning towards not because I don't want to put myself through even more stress, it's already taking a huge toll on my mindbody. But I don't want to feel like I have to "stay disabled" because of this benefit anymore. I want to be free from it. Yes, everyone is telling me to appeal and not back down... but I want to do what's best for myself. And from everything I've learnt from healing from TMS, C-PTSD and even from spirituality/staying present, I know that just because everyone is telling you to do something, doesn't mean it's the right thing for you.

Sorry this has been so long-winded, I just wanted to put as much context as possible. From a TMS perspective, do you think I should appeal this decision or just let it go and find a new way forward? And please do be honest, I'm currently just gathering advice/information so I can make the right decision. I won't make it based off one opinion alone so don't worry about that!

Many thanks if you have read this far

 

[Adam Coloretti (coach)]

Being on this benefit is also keeping me in the mindset that I'm sick, disabled and vulnerable. And I mean absolutely no disrespect to those who are but I'm so tired of feeling that way. Especially as I'm increasingly experiencing moments where I feel strong, energised and confident. Plus, I have TMS - I am NOT sick, disabled or vulnerable. I have the power to heal myself... but it feels like being on this benefit is actually stifling that.

I love that you are aware of this and it's one of the first things I thought just from reading the heading. A lot of TMS is mindset and living out the belief that nothing is wrong, so this is absolutely a relevant factor.

Those around you are likely ignorant of TMS (which is understandable), so they don't understand how keeping on these benefits could have a negative impact on recovery (emphasis on "could") - all they are thinking is you may as well have more financial support as you suffer - which is the logical position without TMS knowledge.

I'm not sure anyone can really comment on your financial position or really provide much of an opinion there - we all have different considerations/costs etc. (you would know best without providing really specific information to us about your finances - I say that having previously worked in a financial planning firm and having studied it also). Having said that, it seems to me (from everything you have said) as if your intuition is pushing you towards coming off of them based on the idea that doing so could help your recovery - and for what it's worth I agree. If you can handle it financially (and if you couldn't you probably wouldn't be able to consider not appealing), then from all the points you've made it sounds as if your truth is to not appeal. As you said you aren't sick/damaged, and very often a key factor to recovery is then acting like it/acting in alignment with that notion to send a strong message of safety to your subconscious brain (here, it may be the case that being on the benefits is sending a message to the subconscious brain that something must be wrong - otherwise why would you be on benefits - the subconscious is very impressionable and doesn't often operate on conscious logic).

Hopefully that makes sense but happy to discuss further. Your awareness and analysis gives me great confidence in terms of your recovery

 

[eluna]

I love that you are aware of this and it's one of the first things I thought just from reading the heading. A lot of TMS is mindset and living out the belief that nothing is wrong, so this is absolutely a relevant factor.

Those around you are likely ignorant of TMS (which is understandable), so they don't understand how keeping on these benefits could have a negative impact on recovery (emphasis on "could") - all they are thinking is you may as well have more financial support as you suffer - which is the logical position without TMS knowledge.

I'm not sure anyone can really comment on your financial position or really provide much of an opinion there - we all have different considerations/costs etc. (you would know best without providing really specific information to us about your finances - I say that having previously worked in a financial planning firm and having studied it also). Having said that, it seems to me (from everything you have said) as if your intuition is pushing you towards coming off of them based on the idea that doing so could help your recovery - and for what it's worth I agree. If you can handle it financially (and if you couldn't you probably wouldn't be able to consider not appealing), then from all the points you've made it sounds as if your truth is to not appeal. As you said you aren't sick/damaged, and very often a key factor to recovery is then acting like it/acting in alignment with that notion to send a strong message of safety to your subconscious brain (here, it may be the case that being on the benefits is sending a message to the subconscious brain that something must be wrong - otherwise why would you be on benefits - the subconscious is very impressionable and doesn't often operate on conscious logic).

Hopefully that makes sense but happy to discuss further. Your awareness and analysis gives me great confidence in terms of your recovery

Thank you for the reply and yeah absolutely, I was doing amazing in recovery when I was fully living out of this belief. However, this how review process has knocked me back into thinking that something is wrong with me.

I believe there is risk involved with coming off these benefits, however, it's a risk that excites me more than it scares me. Financially, things will be tight for a while but not catastrophic. The feeling I have from being off these benefits is of freedom - I feel like I'd be free to just get fully better and fully accept that there is nothing wrong with me. What is stopping me from fully embracing this decision is the opinion of others. Which, as you said, it's an understandable opinion they have considering they don't understand TMS.

Yes that made sense, thank you was looking for advice from a TMS perspective which you've given which is really helpful. I've already come such a long way and I just feel like my intuition is telling me to take that leap now

 

[BloodMoon]

@eluna
I completely understand where you’re coming from. I’m from the UK and was on Incapacity Benefit, which was later revamped into Employment Support Allowance (ESA), and Disability Living Allowance, which became PIP. With each ‘revamping’, it became harder and harder to qualify. When DLA changed to PIP, although my symptoms were profoundly disabling, I stopped applying because they kept moving the goalposts by rewording the questions and for the amount of money I'd been getting, it wasn't worth the anguish of it all.

I did, however, do my utmost to keep my ESA because I simply couldn’t work, it was impossible. It provided more to live on (than PIP) and included National Insurance Credits (important, as they contribute towards the State Pension and being entitled to non-disability benefits such as Jobseeker’s Allowance, Maternity Allowance, and Bereavement Benefits).

When I was on ESA it meant that if, on one day, I found that I could do something I usually couldn’t, I wouldn't ever attempt to do that thing in public—even though fluctuations in symptoms were technically ‘allowed’ and being able to do those things on occasion didn’t actually affect my eligibility. I just felt it was better to be safe than sorry. However, I’d still try to work on those things privately—despite the pain and other profound symptoms I was enduring—if and where possible, and this helped towards my recovery from the vast majority (although not yet all) of my symptoms. This decision may, of course, have slowed my progress, but it didn’t stop it. The important thing was that I knew exactly why I wouldn't try to do those things in public: I wasn’t refraining because I feared the activities themselves—and my brain knew that. You could apply that same mindset to your PIP situation too, but I know that can be difficult/problematic and so I fully understand why you would prefer the freedom (and peace) of not continuing with PIP.

If the reasons ‘the powers that be’ gave for turning you down for your PIP review/renewal don’t affect what you need to prove to keep your ESA when it’s reviewed (which I’m guessing you’re on), then I can really understand not putting yourself through the trauma of an appeal—especially if you’d only likely get the lower rate of PIP and if it wouldn’t make a lot of difference to your quality of life. In my day, the PIP and ESA questions focused on different things and in some cases the same things but different aspects of those things, so hopefully there won’t be any overlap... However, I did read somewhere that assessors can and often do compare applicants’ answers on their PIP and ESA forms, looking for any possible indications of inconsistencies between the two.

I also think—but you’d need to check—that you can apply for and be eligible for PIP at any time; there doesn’t have to be continuous eligibility and application for it, so you could apply again later if you needed/wanted to.

However, with ESA it's a different ball game - at least in my day - there were strict rules around stopping and starting it affecting whether you would be entitled to it all when/if reapplying, how much you got if you were entitled to it and how long you would have to wait in order to start receiving it, and what additional benefits you could be entitled to in association with it.

I mention this only 'just in case': I used this website when I was claiming disability benefits: https://www.benefitsandwork.co.uk. They charge for their guides that cover applications and appeals which include relevant case law, but I found them invaluable for explaining precisely how to word your answers (it shouldn’t be that way, but it’s essentially about knowing the key things to say—and not say, so that things are not misinterpreted).

Wishing you all the best with your decision and with your recovery.

 

[Ellen]

I feel like being on this benefit has actually started to hinder my recovery.

I think you have answered your own question in the statement above.

Dr. Sarno addressed the issue of whether or not TMSers were benefiting from what he called "secondary gain"--the idea that being disabled brings benefits like not having to work or sympathy, etc. He concluded that secondary gain was not a reason for the brain to create TMS symptoms, but that it is done for the primary gain of avoidance of feeling strong painful emotions. So according to Sarno you did not create TMS in order to receive a disability benefit. However, fear of losing it may be holding your recovery back somewhat. Only you can determine this.

 

[Adam Coloretti (coach)]

I've already come such a long way and I just feel like my intuition is telling me to take that leap now

Love it and a big contributor to TMS is often not trusting your intuition (especially in the lead up to it)