15 Apr 2025
Counsellor, psychotherapist, coach and clinical supervisor indu Khurana specialises in helping people with long-term health conditions like MS, ME, Lupus and Fibromyalgia – but are these conditions actually increasing and what is being done to help?
In 2023, a study based on 22 million people in the UK found that one in 10 people had an autoimmune condition. Nationwide, there are over 150,000 people in the UK with Multiple Sclerosis (MS) alone.
In West Hertfordshire (including St Albans) there are at least 300 people living with MS. That we know about. And that is just one variety of autoimmunity.
So with statistics like that, if you yourself don’t have such a condition, you are most certainly likely to know of someone who does have one if not several of these conditions.
So if there are one in 10 people with an autoimmune condition UK-wide, that’s a lot of people just in this county struggling with conditions that fluctuate, some of which are identified by the Equalities Act 2010 as a disability (because their overall trajectory is progressive).
Autoimmune conditions include MS, ME, Chronic Fatigue Syndrome, Lupus, Fibromyalgia, Rheumatoid Arthritis (some of the most common ones).
Some quarters had previously hypothesised that this increasing number of unwell people may be more prevalent in poorer socio-economic areas – that the conditions may be an affliction of deprivation. But these high numbers in a generally affluent county like Hertfordshire would deny that assertion.
So what factors could be contributing to such a rise in numbers?
Diet is often linked to autoimmune conditions. It has been mooted that more deprived community members who cannot afford to buy the healthier foods like fruit and vegetables might be more prone to such conditions.
In recent times we have seen many famous chefs demonstrate that fruit and vegetable produce is actually cheaper to buy in order to cook from scratch than ready-made foodstuffs. So that theory doesn’t stand either.
There are numerous diets that claim to be beneficial – some even claim curative powers. All we really know is that some people do seem to benefit from some dietary changes.
But what I have observed is that whilst diet adjustments can definitely help in terms of fatigue (a very common symptom for a lot of autoimmune conditions, including MS), increased exercise, weight reduction, a more varied gut biome in terms of better digestion and excretion of toxins all help, although they don’t seem to help other symptoms like spasticity or mobility. Stress management remains a significant issue in all these conditions.
Modern lifestyles do not appear to be helpful. And these are just the factors that are most well known and most cited. There are other lifestyle factors that are less within our control that form part of my personal theory, based on observation and personal research, as contributors to the rise in such conditions.
It cannot be denied that doctors are probably getting better at diagnosing autoimmune conditions. Having said that, we also know that there are still too many incidents of incorrect diagnoses or multiple conditions in a person (co-morbidity). So the picture is not simple or linear. I myself was wrongly diagnosed from about 25 years ago to 2017. It was only then that I gained the correct diagnosis of Multiple Sclerosis – although it did not feel like a gain to me.
The population is also getting elder-heavy in that there are more older people, living longer. So it is to some degree inevitable that we are going to get more ailments in the older population. But conditions like MS, ME etc do not just affect the elderly.
One key factor I have noticed is that many autoimmune conditions arise or worsen in middle life. Whilst some conditions may start around the age of 30(ish), they often, remain low level or in remittance until the perimenopause starts.
Once the perimenopause begins, many more people seem to start to decline – certainly in conditions like MS.
MS and other autoimmune conditions don’t just affect women; men are impacted too but in smaller numbers. Otherwise the common features seem to apply in that symptoms do seem to escalate after middle age.
This would fit as men too undergo some level of hormonal change in their middle years – perhaps not as pronounced as women – but nonetheless they do. The medical world is now catching up with this knowledge and we are finally starting to hear about the Manopause.
Getting a diagnosis of an autoimmune condition can be devastating. Doctors don’t tend to go into detail about the conditions or say anything about prognoses or
trajectories. Certainly this is true of the ones I have come across, both in London and since moving to St Albans, here too. It is left up to us patients to find that out ourselves. Occasionally we may be directed to a charity that supports a particular autoimmune condition.
With my MS, I was hesitantly told by my neurologist in a local hospital that I had ‘mild MS’ when I had fallen over four times within the space of two months – always in the street – and tripped by apparent thin air. Thankfully, at the time I was fortunate to have a St Albans GP who empathised and took me seriously when I reported this to her. Many do not.
I had had the numerous tests one has for what turned out to be MS and was afraid, feeling vulnerable as I waited to hear what he had to say. By that time, I had started to use a trekking pole to steady myself when walking – on advice from a different GP – and to ensure that I did not fall over again. Whilst I can now understand how I might be seen as mild because I am not in a wheelchair or bedridden, it felt like an insult at the time because I had never envisaged myself having to use a stick to aid my walking before the age of 60 or 70.
I am still viewed as ‘mild’, although my walking distance has deteriorated so much that I cannot walk far without needing a rest. But always accompanied by my trusted pole. Which I appreciate but hate because I’d rather walk unaided like most people my age.
It has been a difficult journey to navigate – not only as my physicality has continued to decline, but also through the drastic dip in my mood that left me without hope and no visible future. At this juncture, I was again fortunate enough to see the same empathic GP before she retired, who referred me to local support service The Counselling Federation, where I could vent my frustrations and cry about my lost dreams and ambitions in confidence.
But even to get that time-limited counselling, I had to wait three months to get to the top of their waiting list at the time.
That therapist is the only person to know that due to my inability to swerve since the descent of MS, I now have to be hypervigilant when walking in the city centre. With the proliferation of smartphones, kids and dogs, there has been no equal awareness around the impact of MS. So the public do not look, other than to throw a dirty look to me for not moving out of their way when they have changed direction, or their dog/child has almost walked into my feet.
She is the only person to know of my frustration at people’s inattention whilst walking and the fact that I am getting more fatigued, more quickly, because I have to watch my walking route more vigilantly as I attempt to pre-empt other people’s movements. I have wondered if this is part of the London mentality that many St Albanians have adopted due to their being commuters?
I eventually got referred to the MS Service and even more eventually, got to see a specialist MS nurse. In the meantime, I undertook my own research, found the worst-case scenarios and thought my life as I knew it, was over. It was a shock to receive the diagnosis, especially as at that time, I had not even heard of MS.
I’m not sure even typical symptoms were explained to me – even by the MS nurses. So my journey into MS decline has been fraught at times, full of emotional upheavals, involving a loss of identity, grieving a life that disappeared in an instant, getting used to a new life that was not of my choosing, adapting to symptom changes, wondering why me, and then crushed by the learning that I had now entered the world of disability because although the DWP and the Government do not (still) recognise that the MS diagnosis is a one-way street, the Equalities Act 2010 does.
MS is seen as an automatic inclusion to the act.
Now whilst other conditions are not automatically covered by the Equalities Act, because they can improve, they do have a lot in common with MS.
A lot of the symptoms are similar – like severe fatigue, pains, brain fog, mobility, susceptibility to stress and more. The arrival of new symptoms and dealing/adjusting to them is not
just a physical act. It has significant psychological impact too. Sometimes a low mood, loss of hope or anxiety can really destroy a person’s self-esteem, confidence, hope. It can severely impact our motivation, our sense of belonging.
It has done exactly this to me, and it has taken a long time, for me to move to a more hopeful place. For me, a severe treatment that I had to seek out of the country, at great expense, has helped to return hope and motivation to me by stopping disease progression.
Here, more locally, every neurologist I have encountered has had an empathy bypass and has been unable to appreciate the devastating outlook we are left with upon receiving such a diagnosis.
I know I am not the only one. Many of us in my MS support group have similar experiences to share, and terrible symptoms to deal with.
It is difficult for people who do not have such a condition to truly understand what it’s like when an alien force appears to have taken over your body.
The road to recovery in my psyche has been a rocky one and thankfully, because I am an experienced psychological expert, was able to apply what I knew to aid my own recovery. I still needed some help along the way though at times. It is by no means over as the MS continues to haunt each moment of my life – awake or otherwise.
If I am not worrying about the next punitive action by DWP, then I spend time concerned about my peers and support group who are stressing about the implications of such potential Government changes.
For me, I feel frustrated that despite the condition being recognised by some part of some Government that wrote the Equalities Act, others merely pay lip service to the Act and enforce rules a part of us wishes applied to us. If we were ever to get better, I think most of us with MS would happily let go of any benefits we might be in receipt of.
Due to my own experience of feeling abandoned in these ways, I have started to specialise in supporting people with such long-term health conditions through my business. Once I am able to, I hope to be able to provide a tiered fee to accommodate those afflicted but less financially able to buy their own psychological support.
But with over 20 years of personal experience of living with an autoimmune condition, being wrongly diagnosed, undertaking research into holistic care after medication made things worse for me, I think I am in a pretty strong position to help others.
I’ve also coincidentally been trained and worked as a psychotherapist and coach for nearly 30 years and so am in the prime position to offer this service. I have offered to give training to DWP on the reality of MS, but been told that they cannot take up my offer. Yet, they are clearly not receiving correct training internally. Still no cure is on the horizon.
So we must continue to make lifestyle choices, take medications that either produce side-effects or alleviate part of the problems, use natural/alternative or complementary treatments to make our life a little better in the short-term, and await the next unexpected symptom.
Alongside this we wait and hope that something tangible will be found to help reverse this horrible illness.
Although mental health is very much in the news, no one seems to understand that therapy can actually make a significant change to our coping mechanisms and to the slowing down of disease progression.
Stress plays a significant and detrimental role in disease progression as well as symptom severity. As does heightened anxiety.
Low mood and the other mental health repercussions are inevitable when you are facing the barrel of a premature gun over a long period of time. Yet nothing is still available.
This is why I want more people to become aware of the reality of the situation about autoimmune conditions. I hope to play my part in raising awareness and understanding around them as well as actually helping people who are dealing with it here and now.
Because I know how awful it can get.
