As May unfolds, we find ourselves amidst Myelopathy Awareness Month, a time to shed light on the challenges and triumphs faced by individuals grappling with this condition and to amplify the voices of all affected by it.

This month, Esther’s blog delves into the heart of a pressing issue: the conflicting narratives surrounding life with myelopathy. Join us as we navigate the maze of contradictory information and strive to foster understanding and compassion within our community.

Every May, Myelopathy Awareness Month will serve as a poignant reminder of the importance of education, empathy, and advocacy in fostering a supportive environment for those navigating the complexities of this condition.

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Conflicting Information

Well, another month has passed, and we had many great discussions on the Virtual Coffee Breaks. We’ve had a lot of new members joining us, most of them just wanting to know if things would get better. As we discussed this in detail, trying not to dishearten them, we discussed all aspects of myelopathy. The main question seemed to be, “What is life with Myelopathy?” This is where the conflicting information started.

The pain management teams and therapists encourage us to find joy in life, but the government’s stance is that we should return to work, especially as highlighted in recent news. This conflict often leads to feelings of guilt when we accomplish even simple tasks, like potting a plant. What they fail to understand is that, for us, such tasks take longer and leave us exhausted. They don’t realise that a day out means three days of recovery. They don’t see the pain behind our smiles; we often mask our suffering.

So what are the two sides saying? Let’s look at the evidence.

Pain management professionals and therapists often emphasise the importance of finding ways to enjoy life despite long-term illnesses. They typically advocate for a holistic approach that includes both physical and emotional well-being. This may involve:

  1. Pacing Activities: Learning to balance activities and rest to avoid overexertion and manage pain levels.

  2. Adaptive Strategies: Teaching techniques to adapt daily activities to reduce strain on the body and minimise pain.

  3. Mindfulness and Relaxation: Incorporating mindfulness practices, relaxation techniques, and stress management strategies to cope with pain and improve overall quality of life.

  4. Social Support: Encouraging patients to maintain social connections and seek support from friends, family, or support groups to combat feelings of isolation and loneliness.

  5. Setting Realistic Goals: Helping individuals set achievable goals and celebrating small victories to maintain motivation and a sense of accomplishment.

  6. Exploring Leisure Activities: Identifying enjoyable leisure activities that are manageable and align with individual interests and abilities.

Overall, the goal is to empower individuals with chronic illnesses to live fulfilling lives despite the challenges they face, promoting a sense of agency and resilience in managing their conditions.

(Note: The information I’ve provided about pain management and therapy for individuals with long-term illnesses is based on a general understanding of healthcare practices and recommendations commonly found in medical literature, healthcare websites, and professional guidelines. )

While the outlined approach sounds promising in theory, what does the practical reality look like?

Forming part of his Autumn Statement, Chancellor Jeremy Hunt has announced a new Back to Work Plan to help disabled people, those with long-term health conditions, or long-term unemployment to look for and stay in work. The government is to boost four key programmes:

  • NHS Talking Therapies
  • Individual Placement and Support
  • Restart 
  • Universal Support

Also launched was the new WorkWell service as announced at the 2023 Spring Budget and delivered by the Departments for Work and Pensions (DWP) and Health and Social Care.

This is aimed at supporting almost 60,000 long-term sick or disabled people “to start, stay and succeed in work” once rolled out in around 15 areas across England. 

Ministers are also planning to trial reforms to the fit note process to “make it easier and quicker for people to get specialised work and health support.”

However, stricter benefit sanctions will also be enforced by the DWP “for people who are able to work but refuse to engage with their Jobcentre or take on work offered to them”. Benefit claimants who continue to refuse to engage with the Jobcentre will face having their claim closed.  Jeremy Hunt said: “These changes mean there’s help and support for everyone – but for those who refuse it, there are consequences too. Anyone choosing to coast on the hard work of taxpayers will lose their benefits.”

Secretary of State for Work and Pensions, Mel Stride, said: “We know the positive impact work can have, not just on our finances, but our health and wellbeing too. So we are expanding the voluntary support for people with health conditions and disabilities, including our flagship Universal Support programme. Our message is clear: if you are fit, if you refuse to work, if you are taking taxpayers for a ride – we will take your benefits away”

In response, Disability Rights UK has stated: “For the past few months, there has been a seemingly relentless attack on vulnerable, long-term sick and disabled people on benefits. From the tabloid press to the front bench at Westminster, this ongoing rhetoric is sadly nothing new to those who need the benefits system and the meagre benefits it provides but is becoming relentless and in an era of rising disability hate crime, unhelpful.”

“For disabled and vulnerable people benefits are essential to survive financially. The fact is that for many people, benefits is their sole income because work is not an option. For those who could and want to work vague threats around the removal of benefits, removal of free prescriptions and sanctions if not accepting the first job offered are not helping, in fact, they are causing those already in the throes of long-term ill health and lifelong disability to suffer worsening health issues.”

“The benefits system is the fault here, not the recipient. The UN special rapporteur on poverty and human rights said in 2018 that the UK benefits system could be branded “cruel and inhuman” and calling cuts to the welfare system ‘ideological’ and ‘tragic’. Perhaps the better thing to do is to invest in the benefits system, to increase benefits so Disabled people are not among the poorest in society, to re-structure the system to make it simpler and fairer and to put the well-being of Disabled people and those who are long term sick at the top of the political agenda, instead of laying the blame of the country’s financial woes at their collective doors.”

Navigating the conflicting messages of pain management’s encouragement to find joy amidst illness while the government pressures individuals to return to work and potentially threatens to revoke benefits creates a challenging dilemma. Feeling guilty about being unable to work is a common and understandable emotion for individuals facing long-term illnesses. How can individuals with myelopathy maintain control over their health while facing the recurring threat of financial insecurity from government actions?

After looking at both sides, I decided on this. I wrote it in my journal so I can read it whenever I need to, and if you are feeling that guilt, re-read this paragraph whenever you need to, I hope it makes you feel better.

Despite my best efforts, I find myself unable to work due to the challenges posed by my myelopathy. While I understand the importance of contributing to society and maintaining financial independence, my health limitations prevent me from fulfilling traditional work roles.

This inability to work often triggers feelings of guilt, as I worry about being perceived as a burden or failing to meet societal expectations.; however, I have to remind myself that my worth is not solely determined by my ability to work, and that managing my health and well-being is a valid and necessary priority.

I am grateful for the support of my family and friends as I navigate this journey, and I remain hopeful for a future where I can contribute in meaningful ways, even if they differ from traditional employment.

Volunteering for Myelopathy.org provides me with a sense of purpose and contribution to society, despite my inability to work. It allows me to make a meaningful impact in a way that aligns with my capabilities. I encourage others in similar situations to find activities that bring them joy and a sense of connection as these pursuits can greatly enrich our lives despite the challenges we face.

I have been involved with the new stationery line, which has opened up my flair for design! And that definitely gives me joy!  Have you seen the new cards in the online shop?

Never succumb to guilt; prioritise finding joy and fulfilment in life instead.

If anyone has any concerns or problems about benefits or work please check out our blog about benefits for those with DCM.

Virtual Coffee Breaks

If you just want to talk and feel supported then why not pop on to our Virtual Coffee Breaks via the Support Group on Facebook.

  • 2nd May at 11am GMT
  • 9th May at 2pm GMT
  • 16th May at 6pm GMT
  • 6th June at 11am GMT
  • 13th June at 2pm GMT
  • 20th June at 6pm GMT

I hope to see you there,

Esther