The tide
has turned on chronic pain management.
Anyone who follows the media in any capacity will have seen this shift
particularly in regards to opioid medication with regular mentions of
addiction, and the harm it can do. What
generally is getting left behind in this discussion is patients with chronic
pain and the harm untreated pain can also do.
The very few appointments I’ve had with Pain Consultants in the last few years have also had a tone change. It’s gone from a dismissive ‘there’s nothing we can do for you so you need to live with it and manage the pain as best you can with the medications you are on’, to a very similar one that includes a long lecture about the need to reduce the medications I’m on. Ah, because of the side effects? No, that’s not the reason. Because I’m abusing them? Not at all – I’ve taken the same medication at the same dose as prescribed for many years.
No
alternative is offered. I’m not told about any of the latest research or
studies on pain reduction. I’m simply
told it would be best if I reduced my pain relief. I then counter with a
question about quality of life – how am I meant to function with an incredibly
painful condition with no pain relief? It’s a question that never gets
answered.
I have been
under the same Pain Clinic since I developed chronic pain at age 15 and I’m now
in my 30s. So I have now been in
constant, crippling pain for over half my life – and in that time nothing has
changed. There have been no new treatments offered after exhausting the very
little allowed Physiotherapy and Hydrotherapy on offer. I personally spent many years and a lot of
money trying every therapy I could find – from exercise-based to stretching,
sticking needles in me, to weird off-beat ones, ones that target the mind and
many in-between. The NHS, however, has
offered the same few inadequate options.
While I’m
sure research and studies go on in the field of pain – I don’t keep up with
them at all. This may seem strange to
those without pain – but it would simply be a heartbreaking way to spend my
time. Even if there is a miraculous breakthrough, having that get through all
the trials, work for all patients with pain, be funded and offered by somewhere
I can access are all huge steps to climb.
The
judgement always feels like it’s on the patients to be doing something
differently. Self-management. How I’ve come to loathe that term. If cards were dealt to chronic pain patients
– self-management should just be one in their hand, along with Specialist
Consultant, Psychological Support, Care Needs, Equipment, Treatment Options,
Medication and I’m sure you can think of many others. What it feels like
instead is the NHS has either run out of cards to give or have taken the rest
away, so the patient gets left with one single option of self-management and
are told to like it, or lump it.
I’ve had
many of those other cards ripped away from me, but I’m still clinging on to my
medication card. I feel judged for doing so and more importantly, I feel
scared. Every time a new report comes out about opioid medication and addiction,
I wonder what the impact will be on chronic pain sufferers. Of course addiction
happens, and I’m not suggesting it’s an issue that should be ignored – but
instead it’s those of us with incurable painful conditions simply being left
out of the equation instead.
There are
such amazing advances taking place in medicine, but the knowledge we have of
both pain and pain relief still feel so basic.
How much money and research actually takes place in creating non-harmful
painkillers?
The UK
should not follow the same approach as the US that has villainised chronic pain
patients. It seems many Pain Clinics in the US now have a blanket ban on
prescribing pain relief, and will not take patients that have existing
prescriptions. For the very few that do allow medications, they will often make
patients sign a contract with them that has numerous restrictions such as
spot-check urine tests and the fact the patient is simply not allowed to take
anything other than their prescription. While it may seem reasonable on the
surface – this can include patients having to refuse pain relief after
accidents, operations or similar. People
with complex conditions can metabolise medications differently, and I’ve seen
cases where people who took what was prescribed having their prescription
revoked because their urine test either showed not enough or too much in their
system even though they were taking what they were supposed to. Other patients have had to stop taking
cannabis or CBD oils used legally that they found helpful because their contract
had a blanket ban on them.
Not only do
patients find the contracts stressful and coercive (i.e. they have to sign them
to receive any pain relief) a 2010 review also found that evidence was weak
that these contracts actually reduced misuse of medications.
I
personally believe it should be basic care to receive adequate pain relief, and when it’s treated this way the
relationship between patient and doctor simply becomes both negative and
fearful. An article in the British Medical Journal states, “One systematic
review suggested that addiction occurs in 8%–12% of individuals taking prescription
opioids, but most data in the review derive from the USA and we have no
definitive figures for European populations.” So not only are a lot of fears of
addiction coming from data in the US where the addiction rates are simply
higher, then even taking the figure from the US of 12% it still means a huge
majority are taking the medication correctly and as prescribed.
Generally
both chronic pain and Pain Clinics in the UK are an underfunded and
underresourced area. Just taking my local hospital alone five years ago the
clinic had eight full-time consultants, two pain nurses, a pain psychologist
and numerous support groups and pain management groups that were run
weekly. From that list, all that remains
is one part-time consultant. The rest have
simply vanished. Yet rates of chronic
pain patients and their needs have not gone away.
If the NHS wish
to reduce the use of painkillers they need to offer well-funded Pain Clinics
that can offer an array of services and alternatives in return. They can’t
remove both the clinics and pain relief and expect patients to just ‘get on
with it’. The result will simply cause
far more of a burden on other medical and care services as patients deteriorate,
and there will almost definitely be a massive increase in chronic pain related
suicides.
I am a huge advocate of rescuing cats from shelters rather than buying them from breeders or pet shops. Every type of cat, of every age and every breed are available in a shelter somewhere. Only want a pedigree kitten? There will be one, somewhere, in a shelter! So why spend out hundreds of pounds when shelters are having to put down animals they can’t home? (Though really good shelters have no kill policies except due to severe illness.)
Pretty much every stereotype about shelter cats are untrue. They’re just as loving and adorable as any other cat out there – and the great thing about shelter cats is the staff/volunteers will want the match to work – so will evaluate the pet to check how they are with other animals, children, or specific people, and what kind of home would suit the cat best. Some are happy to be left home alone for longer periods of time, others need more attention. Many like to roam outside, while a few want to stay indoors pets. They will also flag up if there are any specific health care issues. It means when you take a cat home with you, you can have far more confidence that the pet will work with your personal circumstances, rather than taking a gamble.
Another reason to choose a shelter cat is it will keep more money in your pocket. Having an animal isn’t cheap, but when you pay the fee at the shelter, it usually covers a whole range of costs including neutering/spaying, vaccinations, flea and worm treatment, and the pet should also be micro chipped as well. My local shelter charges a £60 fee which covers all that, yet my vet charges £60 for a spay alone. What a bargain!
My “rescue” cats
Despite being a huge proponent of rescue animals – none of my three cats are actually from a shelter. But I didn’t buy them either. Two were strays that were found in not-so-great situations, and no possible owners came forward after searching. Even if owners had been located, I wouldn’t have been happy giving them back as they both showed signs of neglect in different ways. My third cat was a kitten that was dumped with someone who had large dogs, so couldn’t keep them (the original owner asked her to look after the kitten for the weekend, then never came back).
My first cat, Button has come on such a long way. When I first got him I used to say he was ‘scared of life’ – jumping at every sound, and running away in terror if a man came near him. It took me a long time to gain his trust, but he’s now the most loving cat, always wanting cuddles and attention.
Bailey, the kitten who was dumped, is full of personality. He will only come to you when he chooses to, so you feel all the more privileged when he honours you with his presence. He gives adorable little head nods to people he’s feeling affectionate towards.
Pepper is my little eternal kitten – half the size of Bailey, who is almost half the size of Button! She’s full of sass, keeping the two boys in line, and constantly begging for treats – and is often found in random places (the bin, a cupboard, a box that’s half the size of her, and so on!)
Why Poppy’s Place?
Poppys Place is an animal rescue that have two bases – one in Colchester and the other in Dartford. They’re 100% non-destruct, and often take cats in that are hard to adopt. The love and care they have for the animals they rescue shines through everything they do (just read Sybil’s story here).
What am I doing to help them?
I’ve made a set of six fused glass coasters each with a different cat image on it, and I’m going to give 10% of every sale to Poppys Place. You can find the coasters on the Sparkly Place Fused Glass Facebook page.
They will make a lovely addition to any cat lovers home. And don’t worry, I haven’t forgotten dog lovers – they will be another set for them, with the same 10% going to Poppys Place.
Having written about organ donation in The Huffington Post in February, I was contacted by the makers of a new documentary called A Love Worth Giving to ask if I would help to spread the word about their Kickstarter campaign.
The documentary follows a newly married couple Sam and Luke. Sam has Cystic Fibrosis and needs a double lung transplant urgently. The documentary follows her battle as she has to deal with false alarms and her health going downhill.
The makers have started a Kickstarter Campaign to fund the post-production and release of the film. I’ve watched the trailer and already it looks incredibly professional and well-done, and looks to be a heartbreaking story. (You can watch this by clicking on the link to the Kickstarter.)
The makers of the film have also set up a page on their website where you can submit a photo of one of your loved ones – if they have either died waiting for an organ, or if on their death they donated organs to help save other lives. This is a really lovely touch, and it would be great to spread the word to get the film made, and to hopefully help change attitudes about organ donation.
While 9 out of 10 people in the UK support organ donation, only 3 out of 10 actually sign the register. And many family members override their decision on their deaths.
This has to change urgently to many more lives can be saved.
There are only three days to go to get the documentary funded. Please dig deep and spread the word!
Edit August 2015: I’m really pleased to say this project did get funded, with 380 backers pledging£15,435. As of this month the documentary is complete, and I can’t wait to see it! The documentary will have its world premier at the 2015 Rhode Island International Film Festival – which is excellent news. Well done to them!
I remember signing up to be an Organ Donor. They used to have those little credit-card sized cards you filled in, and kept in your purse. I went through each organ and ticked or denied permission depending on how ‘weird’ it felt. Later I realised I was being silly – I would be dead, and there was nothing weird about saving or prolonging a life, or giving someone sight. Even if it felt odd ticking the box to say they could have my corneas.
9 out of 10 people in the UK support organ donation, yet only 32% are on the Organ Donor Register. Every day three more people die as they wait on the register to be matched, and only 1% of people that have died in hospital are then able to go on to donate organs. These are horrifying statistics that show why every person who signs up to the register is needed.
A new campaign has just been launched in conjunction with Heart Transplant UK called ‘Give Your Heart This Valentine’s Day‘. The website allows users to send their loved ones their ‘heart’ on a Valentine’s E-card, which will also register them on the donor list.
Stacie Pridden is 24 and has Pulmonary Hypertension. When diagnosed she was given three years to live, but she’s now been waiting two years and nine months for both a heart and lung transplant. Stacie has been matched three times, but each time the operation has been cancelled at the last minute due to problems with the organs discovered at the last minute. I can’t image how that must feel.
For a successful organ donation to take place, the person has to die in a hospital without damage to their organs, and they have to match up with someone waiting for a transplant. Finally, the family of the deceased has to give permission even if that person is on the donation register.
If you’re already on the register, it’s essential to tell your family of your decision to donate your organs. When you lose someone it’s a very shocking and traumatic time, and so a medical professional asking about organ donation may get an automatic no – but if the family are fully aware that you want to donate that may be at the forefront of their minds when asked that question. Families are generally more likely to agree if someone has actually registered their wishes (95% of families agree when they know the decision, compared to 45% who agree when they aren’t sure what the person wanted).
On the whole families in the UK are more likely to say no whether they’re on the register or not than any other country in Europe, so something seems to be going wrong here. It may help if it was openly discussed with families, and they hear what your wishes are directly from yourself – rather than a medical professional. Sending them a card from Give Your Heart will make the answer clear to them.
There is also a huge shortage of people who are Black or Asian on the register, yet these ethnic groups are actually more likely to need certain organ transplants due to a high susceptibility of having conditions such as high blood pressure or diabetes. If anyone is unsure if their religion allows them to donate, the NHS has more information here. There are very few religions that prohibit it. Registering to be a donor is really easy, you no longer have to fill in forms or cards and carry them with you, but simply pop your details onto the transplant register online. If you’ve moved house, or changed your surname recently, don’t forget to amend your details here.
One thousand people die each year waiting for a transplant. Let’s get #GiveYourHeart trending and make sure you give your heart this Valentine’s Day.
Karolyn Gehrig, like myself, has Ehlers-Danlos Syndrome. It’s a genetic condition that’s caused by a fault in the connective tissue – the stuff that basically holds us together. While the condition has various types, there are some symptoms that are common across the Ehlers-Danlos spectrum. It’s usually incredibly painful, exhausting, and impacts every part of the body from the joints to the organs. And there’s no cure. Many of us spend endless time in and out of hospital.
Last April Karolyn tweeted some selfies. Her and everyone else, right? But her photos are very different to the usual backgrounds of partying and having fun with friends. She’s framed by treatment rooms, face masks and the wires attached to her body. She’s sporting her silver ring splints (worn to reduce joint dislocations) and uses her walking stick as a prop. My favourite is her skin-tight dress that’s covered in pills. She tags these selfies as #hospitalglam, and they certainly are.
Since Karolyn’s tweets many others have joined in; posting selfies in waiting rooms, after operations or of a high heel peeking out of a hospital gown.
So why has this resonated for those of us with disabilities?
Having a chronic illness can be scary, and all-consuming. You can feel like you’ve lost control when your body won’t do what you ask. Decisions are constantly taken out of your hands – about your mobility, ability to work, social life and relationships. And at the centre of that loss is the medical world. Most people don’t get to choose their consultants, their treatment plan or their medication. Even if you have a great doctor you are constrained by budgets, research, and availability of treatments.
In the midst of all this other decisions get wrested from you too – your hair, your clothes and your accessories. Funky handbags are swapped for practical ones that stay put when you’re using a walking stick or crutches. A favourite necklace has to be removed because it tangles with wires. You pick new clothes based not on the designer, or because you love the colour, but by comfort so as to reduce chronic pain flare ups. Smart shirts get thrown out because buttons were designed by the devil, or t-shirts discarded because you can’t lift your arms up. I was never a fashionista, but I’ve lost count of the items I’ve thrown out that simply no longer fit into my world.
And if we do dare to put on make-up and nice clothes and do our hair we are often misjudged – “she can’t be that unwell”, we hear, sometimes silently, sometimes not. This feeling creeps into the NHS too. I know of many people who won’t wear make-up when discussing pain relief with a doctor because they think they won’t be taken as seriously.
The Department of Work and Pensions openly judges appearance during benefit assessments. They ask assessors to make notes on “the claimant’s appearance, manner, hearing ability, walking ability,” and they will frequently use this ‘informal observations’ section to make comments on clothing, make-up and hair. A comment on my own form actually stated: “Wearing brightly coloured clothes which shows no outward sign of depression”. I was wearing baggy yoga clothing because anything tight was painful, and the assessor made a totally inaccurate correlation between the colour of my t-shirt and my health.
Similarly, I often wear my hair in a ponytail because it reduces my neck pain. On my medical form that hairstyle seemed to equate to an ability to lift my arms, but I wasn’t asked if someone else had done it, which they had. Due to notes like these made by the assessor, my Disability Living Allowance claim was turned down twice. The two tribunal cases that followed were horrific. I was cross-examined and treated like a criminal.
These experiences have enormous ramifications for so many people trying their best to navigate the system. The wait for a tribunal can last between six months to a year, and causes immense stress.
When you have an invisible condition, you can face an additional level of scrutiny and are often having to work much harder to prove how ill you feel. So it’s not surprising that sometimes I feel like I’m losing myself. Already, my world centres on ill health – doctors’ appointments, hospital stays and physiotherapy. But I’m still a person under the hospital gown. I still like my nails to be brightly coloured even when my hands are covered in bruises from a cannula, or welts from a blood pressure machine.
#hospitalglam is about taking back that control and saying you can wear what you want to, and it doesn’t represent how you feel. While disabled people are already there, society and the medical establishment lag behind – often still expecting one specific look from a person deemed chronically ill.
Make-up and smart clothes shouldn’t clash with anyone’s idea of disability – so come on world, catch up.
Hi my name is Rena McDaniel and I write two blogs: The Diary of an Alzheimer’s Caregiver, where I deal with being a caregiver while dealing with my own diagnosis of Felty’s Syndrome. The other is The Million Mile Blog, it is a travel planning, review and tips blog. I live in South Carolina with my husband of 23 years and my mother. I have two children and two grandchildren (with #3 and 4 coming in December when my daughter has twins!). Thanks so much to Jade for hosting me today.
Felty’s syndrome is a complication of patients who have rheumatoid arthritis. It is diagnosed by the presence of three things: rheumatoid arthritis, an enlarged spleen and an abnormally low white blood cell count. Patients with Felty’s syndrome can have more infections than the average person and can develop leg ulcers. Felty’s syndrome is uncommon. It affects less than 1% of people with rheumatoid arthritis.
I was diagnosed three years ago with Rheumatoid arthritis. I was sick for a long time before this diagnosis. At the time I was being treated for a car accident that I had in 2009. At first I was just sore all over, especially my left arm and neck.
I was first diagnosed with a strain. After I went back to work I began to have more problems. One day my feet would be sore and swollen and I would secretly take off my shoes to work. The next day my hand would be swollen or it might be my shoulders. I was then diagnosed with Fibromyalgia. I tried physical therapy, acupuncture, medicines etc. Nothing seemed to work. It got so bad that I was no longer able to work. I couldn’t drive because I couldn’t raise my left arm or look over my shoulder. I kept getting treatment and it seemed I was getting worse. I finally just gave up and for almost a year I was pretty much bed ridden. Things were happening in my life that were stressful: my son was serving in Afghanistan, my husband getting laid off, my daughter graduating and both of my children getting married. Everyone kept telling me I had to fight this and I don’t know how many times I heard that it was all in my head. All I knew was I felt very sick. I couldn’t eat because my stomach was so swollen. I quit having bowel movements. I went on this way for a long time and I honestly felt like I was going to die.
My husband finally talked me into going to the hospital ER. They ran tests and my blood counts had bottomed out. I don’t remember a whole lot of what happened, there was alot going on at once. I remember a doctor telling me I was very sick and that if I had waited another three hours I would have died. I was given three blood transfusions and put into the ICU for about a week and a half while they ran, as they told my husband, every test from A to Z. I had eleven doctors total. This is when I was diagnosed with RA and I first heard the words Felty syndrome, even though it wasn’t explained to me. I admit I was just glad not to hear it was all in my head. At first the doctors didn’t think that I would survive they called my family in. My siblings from SC and FL soon arrived. My son was stationed in Japan at the time and the Red Cross flew him home. I will always be thankful for that.
As you can see I did survive. I spent three and a half weeks in the hospital. When I was released we packed everything we had up and moved to SC to start a new life. My husband had a new job with medical insurance, even though I was preexisting for the first year. That is what started this journey through the ups and downs of Felty’s Syndrome.
Today with the help from a great Rheumatologist and a new infusion drug called Rituxan I am able to live a somewhat normal life. I still have to be careful about infections but I can take care of mom and do most of my house work. I don’t vacuum or mop anymore, I can’t lift things very well and sometimes I just get so tired I can barely stand up. But I am alive and very thankful for all the help and support I get from my husband and family. My husband does the manual work that I am unable to do and between the two of us we have made a great life in South Carolina.
Ehlers-Danlos Syndrome is a connective tissue disease, caused by faulty collagen. Collagen is the ‘glue’ of your body and is part of your skin, organs, ligaments, tendons and much more. The condition is multi-systemic, which means it impacts almost all of the body in some way, including the heart, lungs, auto-immune system, gastrointestinal tract, eyes and in lots of different ways that are too numerous to mention. There are different types of the condition, which range from highly disabling, to some types which are even fatal.
The most common type of Ehlers-Danlos Syndrome is Hypermobility type. This is because the most prominent sign is the Hypermobile joints – colloquially known as being ‘double-jointed’. This can occur in any joint, and means the ligaments and tendons aren’t holding the joints in place as they should, and allows the joints to over-extend. This causes damage in the connective tissues surrounding the joints. Joints can also dislocate, or semi-dislocate (subluxate) which is very painful.
As the connective tissue isn’t doing its job, the muscles take over. This means they’re usually tight and in spasm, and overwork which causes additional fatigue.
The condition is genetic and two-thirds of sufferers inherit it from one of their parents. One third get it through a genetic mutation.
How does it impact me on a day-to-day basis?
While I was born with it, the symptoms throughout childhood seemed random, so no one ever realised there was an underlying condition. I had lots of bouts of pain throughout my childhood that doctors dismissed as growing pains, and often my legs or ankles would give way and I’d fall to floor for no reason. My healing was poor and left scars easily. Simple tasks like tying my shoelaces were difficult, I struggled to write for long periods, and my handwriting was awful.
At the age of 15 my pain became constant. I now know this is a very common time to trigger the condition more seriously, but it took almost nine years before a consultant finally stopped shrugging their shoulders at me, and put a name to my condition. For all those years – the years most people are growing up, and having a life – I was getting home from college, or university and collapsing in bed, and spending all my money on alternative therapies to try and get some relief as the doctors couldn’t offer any help.
I have never had a pain-free day for almost twelve years. It’s unrelenting, and even worse is unpredictable. One day I could be limping from my left leg and unable to move my arm, and the next day they’ll be fine but my hip feels like it’s on fire and my neck is locked in place. This is makes it difficult to know what I’ll be able to do that day – and how much help I’ll need.
The condition impacts the auto-immune system and produces too much adrenaline, so I sleep really badly, and have insomnia. The fatigue is crippling, and I often have to spend all day in bed, or unable to function. Often just being able to do a simple task like have a shower, or get dressed is an achievement and all I’ll be able to do that day.
To be able to do something else – like go to a friend’s house, have a meal out or even worse – attend an all-day event is a bit of a nightmare, and involve lots of planning. For days in advance I’d need to rest to conserve my energy, then on the day take every painkiller available, and use every bit of my strength to get through it. Recovery will usually take weeks.
My hypermobile joints are particularly bad in my spine, and so I’ve developed bulging discs, arthritis, degenerative lumbar disease, scoliosis and cysts on my spine due to the over-extension there. As a result my mobility is impacted, and I can only walk with extreme pain, and so use an electric wheelchair.
Why is awareness so important?
The diagnosis rates of the condition are really poor. The average time of diagnosis for sufferers is over ten years, but for many it’s much longer, and some even live their whole lives without knowing what’s wrong with them. Many are also misdiagnosed with other conditions, or told it’s all in their heads. Ehlers-Danlos Syndrome is estimated to affect one in 5000 people in the UK, however according to a recent study, around 95% of cases go undiagnosed or misdiagnosed every year, meaning this figure is in reality much higher.
EDS is treated terribly by the medical community. I wrote a little more about this topic in Rare Disease Day and Ehlers-Danlos Syndrome. In general most doctors spend a few minutes covering the condition in their studies, and so don’t recognise it when they come across patients who are looking for answers. It’s also highly neglected in terms of research, care, NHS services and provision of medical expertise. There are only a couple of specialists in the whole of the UK for the condition, which are usually oversubscribed due to the demand.
There are some quite simple ways of looking out for the condition, so we need to get the word out to front-line medical staff – GPs, nurses, physiotherapists – as well as members of the community, so they can spot the signs as early as possible, and get help for people before they have to live years in pain without understanding why.
In summary:
If you recognise any of the symptoms mentioned above in yourself, your child or someone you know – particularly hypermobile joints, long-term chronic pain and other unexplained symptoms – please seek further medical advice, and request to see a specialist as soon as possible.
The Awareness Ribbon for EDS features a Zebra Print. This is from the phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” This means when presented with a set of symptoms – the most obvious answer is usually a common condition. EDS adopted the zebra to say – hey, rare conditions exist too!
From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!”
It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world.
38% of people believe disabled people are a burden on society.
But these attitudes spread quickly, and seep into all parts of life. That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.” Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.”
It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible. Shops, facilities, services and buildings still haven’t complied with the law, and continue to get away with it.
47% of disabled people currently work compared to 77 % of non-disabled people.
I’m a wheelchair user, along with 1.2 million other people in the UK. Last week I had an appointment at my new doctor’s surgery. Their website proudly states the following on the front page: “We work from a purpose-built surgery with good parking facilities at the front, with wheelchair access.” Yet I was faced with three problems before I even reached the treatment room. The front door was really heavy, and swung back to smack my chair while trying to get in. The receptionist, who had watched this struggle, was behind a high desk which meant I had to call up to her. Luckily I was just telling her I’d arrived, but had I wanted to have a conversation privately, it wouldn’t have been possible. The treatment room is at the end of a long corridor, and just before her room was another door propped open. As I got there, the door suddenly swung closed onto me. I tried to open it and push forward, but the doorframe was so narrow – I couldn’t get through.
More than 1 in 4 disabled people say they frequently do not have choice, or control over their daily lives.
My doctor eventually heard the bangs and came out, and it turned out the door had an automatic opener – which for some reason had suddenly failed. That alone was annoying, but I then had to dismantle my wheelchair part by part, with my GP watching me. I have never had an issue getting my wheelchair through a standard width door before. I then had a very awkward drive into her room, trying to hold everything, control the chair and navigate the packed room.
I was mortified. I thought, ‘She’ll think I’m a bad driver!’
Only later did I think – that was their fault. Why should I now be afraid to go to see my GP as I can’t face it happening again?
This happens time and time again. I can’t get into the vast majority of the shops in the town I live in. Those I can have difficulties – narrow sections, steps, are too packed, put displays in the aisles, don’t have a lift, and so on.
65% of people have admitted they avoid disabled people because they don’t know how to act around them.
Over the past few years it hasn’t been possible to pick up a newspaper without finding a story on the welfare state within. Quite often these stories have focused in on people with disabilities, painting a picture that many are claiming fraudulently. How often do you see headlines such as ‘Disability benefits cheat caught out when she was spotted walking the Great Wall of China’ from The Express, or ‘Benefit cheat who claimed £21,000 in disability benefits while working as a boxing instructor spared jail’ on the Mail Online. Or vague headlines that cast doubt on the system itself, such as another by the Mail Online, ‘ Disabled benefits farce: 94% of new claimants have never been assessed by a doctor.’
180 disability hate crimes are committed every day in this country.
While obviously every case of fraud is one too many, the fraud rates of disability benefits are very low. The scrutiny over benefit claimants has had consequences. It has become quite clear that certain sections of society feel that because some people with disabilities receive a form of state assistance, funded by the taxpayer, they should then get a say over their lives. A judgement, a decision over who exactly fits into the category of ‘disabled’ and who does not, and how they should be living their lives. Also over the last few years the support systems available to people with disabilities have been slashed – within the NHS, Social Services, charitable funding and the benefits available to them. Yet the public outcry to this has been minimal. Perhaps they’re too busy reading stories of the lavish lifestyles of benefits claimants, and mainstream documentaries portraying a vision of exactly what these ‘scroungers’ get up to behind the scenes, which increases support for further cuts.
The reality of the situation is completely different – the vast majority of claimants are genuine, and live in fear of the brown envelope arriving from the Department of Work and Pensions saying their support is being reassessed, causing stress and anxiety it may be lost entirely, or reduced. This fear isn’t unfounded – it’s a stated aim by the government. The money is vital in paying for care, transportation and all the high costs associated with having a disability, of which there are many. The Joseph Rowntree Association has found that people with a disability should be receiving at least £200 more per week just have to have an acceptable quality of life, with the rate increasing significantly depending on their needs and disability.
The poverty rate for disabled adults in the UK is twice that for non-disabled adults.
Disabled people shouldn’t feel dehumanised, excluded and invisible. But how do we stop this trajectory from happening, and make inclusion a priority?
Let’s start with a fundamental truth: having a chronic illness sucks. There’s no denying that.
However, looking at the people I know who live with a variety of long-term conditions, a lot of them have developed certain skills that can help them.
When you have a chronic illness, your body often fails you. You frequently have to stop doing normal everyday tasks, activities and hobbies that you once enjoyed. Your illness can change on a daily basis, or even multiple times within an hour making it very difficult to plan anything in advance.
Resilience is defined as the “ability to spring back into shape and recover quickly from difficulties.” It’s something those of us with chronic illness have to do every day. Any day can bring a new symptom, a flare up or even a new diagnosis. We have to learn to live with that, and deal with our new circumstances, whatever that may be.
We’ve been dealt a certain hand of cards, and we can’t give up or take a break from it – we just have to keep fighting.
Strength is a fundamental facet of chronic illness. The strength to drag ourselves out of bed even when every cell in our body is screaming ‘what the hell are you doing?’ Or strength to put a happy face on when you’re meeting friends, or going to a family function. It takes a lot of strength to keep going, no matter how bad things get.
But there’s also the strength needed to advocate for ourselves – because even if you’re fortunate enough to have supportive family or friends, you know your body best and you will have to fight for what you need, often over and over, and have to be brave enough to ask for help when enough is enough.
Having a health condition means we need to become an expert in lots of different areas. Whether it’s our condition, treatment, benefits/welfare, how to obtain assistance, relevant laws and much more – we have to know it all! We’ve constantly got a new battle on our hands, as it’s rare help gets handed to us on a plate.
And having a rare condition brings added pressure, as we’re often also having to educate our doctors and medical professionals in what exactly our condition is in the first place (while trying not to annoy them!) before we’re even able to get onto treatment and management options.
Knowledge is vital for us to understand our own circumstances, and can also be very empowering.
Having health issues tends to open your eyes a lot more to other people’s struggles in a way you may not have even thought about previously. Compassion for other people comes more readily when you can relate to them due to your own experiences. Empathy is defined as, “The ability to understand and share the feelings of another.”
Chronic illness can cause an amalgamation of issues that aren’t just medically related, and it can make it easier to have an insight when other people experience their own difficulties.
In my own personal experience, I find when I mention I’m having a bad day, or share a fundraiser for a local charity – it’s my friends who have their own health issues who are the first to respond offering support.
Creativity comes in lots of different forms, from the traditional arts and crafts type, to the way you live your life. Through my own conditions I’ve tried to embrace my inner craft goddess, and discovered so many other people with disabilities also take part in similar pursuits. Perhaps because it’s a great way to distract yourself from pain, and also because enabling yourself to create something to be proud of brings a positive element to your life.
But creativity isn’t all glitter and glue – it’s also having to be creative with our own lives. You have to learn to think outside the box, find ways around issues and constantly problem-solve. The ways we used to do something may not now apply to us, such as hopping on a bus to go shopping. We may have to use our imaginations to devise easier and shorter routes, alternatives to carrying heavy items, and keep the trips out short and sweet to manage fatigue and pain. Instead of saying “I can’t do that” it becomes “How can I find a way to do that?”
If you know somone with chronic illness is having a bad day, why don’t you share this with them to give them a boost?
What would you add to this list? Please comment below with some of the skills you’ve gained, or skills that you see your friends/loved ones using.
There are lots of these special ‘days’ – Talk Like a Pirate Day (19th Sept), Hairstyle Appreciation Day (30th April) and National Sandwich Day (3rd Nov) but a really important day for me is Rare Disease Day, which is today.
A disease is defined as a condition that’s abnormal, and affects the body of a living being.
Here are some facts about rare diseases:
There are over 6000 rare diseases
A disease is classed as rare if it impacts fewer than 1 in 2000 people
30 million people live with a rare disease in Europe
80% of rare conditions have a genetic origin
I have Ehlers-Danlos Syndrome, a genetic connective tissue disorder.
There are various types of the condition and the most common type is estimated to impact anywhere from 1 in 5000 to 1 in 10,000 and the least common types have only been diagnosed with a small handful of people.
Rare diseases are neglected – in research, care, NHS services and provision of medical expertise. There is a lack of understanding and awareness in every part of the medical community. But rare doesn’t mean we don’t matter.
While I had mild symptoms from birth, the real trouble started when I was 15 – and it took me another eight and a half years to be able to put a name to my pain, fatigue and countless other symptoms. I’m lucky – many others don’t get diagnosed at all. That’s why recognition is vitally important.
Many seeking answers are instead labelled incorrectly. The word hypochondriac sneaks into their medical notes. They’re told their attitude is too negative, or point-blank informed it’s all in their heads. People with the condition usually look perfectly healthy, which makes it even easier to get dismissed.
Some people don’t live long enough to have the reassurance of knowing they were completely right, and there was a reason they felt the way they do like in this awful story.
Once I knew what was wrong with me, it changed everything. I was able to look for the national charities, find other sufferers and do copious amounts of research. Everyone should be able to do that – and from as near to birth as possible. Simple changes like strengthening your muscles before they become locked in a cycle of spasms, wearing orthotics to protect flat feet and looking out for the myriad of complications that can arise from the condition can make a big difference.
Awareness for rare conditions isn’t the same as for many other conditions. To me it can be summed up in the conversation that usually goes,
“So what’s wrong with you?”
“Ehlers-Danlos Syndrome.”
And the response is a blank face.
I don’t expect people to know specifics – but if you said to someone you had MS, they’d probably at least gather it’s quite debilitating without having to try to explain further.
While that may not feel so bad – imagine that lack of recognition continues with your GP, your rheumatologist, physiotherapist – the people meant to be supporting your care, as well as everyone else. You have to spell the words out to them carefully, and they promise they’ll look it up – but yet the next time you see them they’re none the wiser, and you know they forgot to pop it into google. We deserve better, and it makes you feel very alone.
When I was diagnosed I spent an hour with the specialist consultant. He was the first person who nodded when I mentioned symptoms, and pointed out a lot I hadn’t even realised were significant. He literally started from when I was born onwards, and put together a pattern that led to my diagnosis.
However, an hour isn’t enough -not when you’ve just been diagnosed with a condition that impacts 95% of your entire body. Every organ, every joint. No one talked me through the heart issues, the gastrointestinal problems, bladder, muscle tone, nervous system, eye sight, breathing issues , and the terrible sleeping problems. No one told me that while you’re given a ‘type’ within the condition – there’s lots of overlap, and it’s mostly just guess work.
To this day I’m still finding new information, and putting facts together – and I usually find that out from other people with the condition, not a medical professional.
So this is what I want from Rare Disease Day…
I want every medical professional to have a brief understanding of the condition, and realise it’s only rare because they aren’t spotting all the undiagnosed people with it. Professor Grahame, a Ehlers-Danlos Syndrome specialist consultant carried out research that suggested “for every one person in England who is diagnosed by a rheumatologist as having hypermobility syndrome, there are probably 19 that aren’t yet diagnosed.” That’s around 85% of cases that are going untreated, being told it’s in their head, or being misdiagnosed. This has to change.
The most common sign of Ehlers-Danlos Syndrome is hypermobile joints – something that should be second nature for GPs/physiotherapists to have a quick look for if someone is presenting with wide-spread pain. I first heard the word hypermobilty from a physiotherapist I was lucky enough to come across. She asked me if I knew I was hypermobile, and I said I didn’t know what she meant. She explained it was also known as being double-jointed, but the only time I’d ever seen people mention that was when people did funny tricks with their hands. My hands looked normal. “Of course you’re hypermobile,” the physiotherapist said to me. “Just look at you, look at your toes, you just are!”
That’s all it takes. One person to have the knowledge. To be able to spot hypermobile joints, to notice the person with pain in every joint that is getting negative results to every test, to the person gesticulating with their hands as they speak, with bruises or injuries they don’t remember getting, that might be a bit clumsy. If you spot just one of those things, just have a think about mentioning Ehlers-Danlos Syndrome and you might change someone’s life.
In April this year the law around ‘no win, no fee’ arrangements changed due to lobbying from the insurance industry around the so-called compensation culture. This has massively backfired onto the most vulnerable of society, and has made enforcing the Equality Act 2010 incredibly difficult. I wrote about this issue in August, but since then have heard almost nothing more about this problem. This is one of those subjects that should be making headlines, causing protests and marches, but instead the response has been limited.
Just to summarise: If a person with a disability wanted to bring a legal case against someone – for example a bank, for refusing to provide a ramp, or a university for failing to adhere to a request to provide course materials in braille for a blind student, they could have entered into a no win, no fee agreement with a specialist law firm. These agreements are backed with an insurance policy, and would mean if the case was lost, the insurance company would protect them from any fees, and if they won – all the costs were met by the losing side. However, the change to the law has meant even if the case is won, they cannot claim the costs of the insurance premium back.
It may be thought that it’s completely reasonable to pay the costs out of any compensation received – but damage payouts tend to be pretty low. In fact – most of the time it will mean having to pay out much more than any compensation amount they could ever hope to receive.
This means the following:
Legal proceedings will be reserved for only the richest in society.
Shops and service providers will be able to ignore the law, as no one will be able to afford to bring a case against them.
It has vastly reduced the power of the Equality Act overnight.
Legal cases bring change that help shape society to be accessible to people with disabilities.
Today Unity Law has launched the Equal Justice Report, which you can read here. Please do read it to find out the specifics of what needs changing, and the impact it will have. Here are two simple ways you can help:
Write to your MP. Unity has provided a template letter within the report, but I have found not all MPs respond well to a template letter – so write how it may impact you or your loved ones.
Create a buzz on social media – share the report on every platform you can, and tweet using the hashtag #equaljustice
People need to realise the impact this will have, and that will only happen if we all pull together to fight back against this terrible change in the law.
ned in Japan at the time and the Red Cross flew him home. I will always be thankful for that.
