Hidden in plain sight: Finding relief when living with an invisible disability

Tina McDermott-Jones, 32, from Chesterfield, couldn’t pinpoint when the pain began, but it had developed over a long period of time.

“Things really noticeably went downhill in 2009. I was working in Northampton and I just struggled more and more each week. Eventually […] the most basic things were a real struggle,” she says.

“My grocery shopping, my laundry, everything had to be minimised into tiny chunks, if I was able to do it at all, and the rest of life wasn’t happening at all.”

“I had to accept that I needed a period of time off sick, and eventually because I wasn’t getting any better, my family came to help me move back home. […] I wasn’t able to look after myself.”

Tina was diagnosed with ME (Myalgic Encephalomyelitis) in 2010. She describes the condition, which is also referred to as Chronic Fatigue Syndrome, as feeling as if “your nervous system’s revving like a car when the brakes are on. You’re revving the engine- you’re not going anywhere, but you’re drained.”

After a whole year of not knowing what was making her so exhausted, Tina was relieved when doctors finally found the cause. Her default response was to just get back to normal. But things only got worse when she tried to push herself to do what she did before the illness.

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Tina McDermott-Jones

Tina’s nervous system is extremely hyperactive, and she has intense stress responses to the smallest of things. She describes these responses as feeling like a shock, a huge fright- one you might experience if you were almost run over. Tina feels that these severe reactions, continually fuel her fatigue.

“Imagine that kind of response going on all the time. Our bodies aren’t designed to do that. Fight or flight is designed for very short, specific situations, it’s not supposed to happen all the time in the background.”

There is no specific treatment for ME. It’s almost impossible so say how long it’ll take someone to get better and to what degree they’ll be able to recover. Those with the condition are recommended to find the best ways to regulate their body’s nervous system.

Of the all therapies and treatments Tina had, Tai Chi was one of the most effective. The slow, repetitive movements helped to calm her body’s reactions. She says this allowed her to gain a greater control of her symptoms.

Tina’s symptoms include having trouble with her concentration and balance. She also has poor circulation, which has caused physical limitations, due to a heavy, achy feeling she has in her arms and legs. Tina also suffers from severe headaches that can be triggered when she does too much.

“I am mindful of how much walking and standing I do because that tires me out very quickly, and it’s not always straight away either. Sometimes there’s a delayed reaction […] a few hours later or the next day and you’ll suddenly feel totally wiped out. For me it varies, sometimes I’ll feel tired straight away, but more often than not, it’s a day or two after.”

Tina now coordinates fortnightly Seated Tai Chi sessions in Chesterfield. This adapted form of the ancient martial art, offers extra support for those who may find the exercise taxing. The sessions have proved popular with the attendees, most of whom have ME or Fibromyalgia (a condition similar to ME, that is characterised by chronic pain rather than fatigue), as they are able to do a little at a time, sitting whenever required.

“Seated Tai Chi is a great way to temporarily take a little break from being unwell, because having a long term illness is a big burden for the person that’s ill, and for their nearest and dearest as well,” said Tina.

Tina says “[becoming ill] is an awful lot to adjust to and you do go through a cycle of emotional processing with it- a little bit like a grief cycle when someone passes away, because you’re effectively in mourning for your previous life.”

“You’re very angry with what’s happened and then you’re very depressed about it and then you feel very helpless and you’re not sure what to do next. It’s quite a frightening thing to have your previous existence come to a halt and you just have to start again.”

Starting again meant Tina had to adjust to a new life, one that led her to lose some friends. It meant being unable to work or to socialise. For Tina, it meant a loss of independence.

There are over 11 million people in the UK with a limiting long term disability or impairment. People with an invisible disability- a sensory, neurological, physical or mental condition, that although doesn’t always have physical signs, leaves the sufferer feeling exhausted and in pain, often feel isolated and unsupported. Their symptoms are frequently minimised, misunderstood and in some cases disbelieved.

“I definitely feel like I have to explain my illness to others,” said Tina.

Societal perceptions aside, Tina says it’s most important that the individual with M.E has their own personal grasp of their body’s patterns and triggers.

“You get to a stage where hopefully you’re not getting any worse, you sort of plateau out. […] Once you know where your plateau is, where your ‘new normal’ is, then you can work on how to improve from there.

Tina was able to gradually get better. She found having strategies in place to try and recuperate energy or to deal with the fall out of feeling more tired than she expected, was vital to her managing her condition.

Although still not completely well, Tina is now at a point where she is able to work. Her balance, concentration and ability to sleep at night has greatly improved. She credits the Seated Tai Chi sessions and the ongoing support of The Sheffield M.E and Fibromyalgia Group, as being a big part of her gradual recovery process.

“What you need to try and avoid is really overdoing it and going backwards, because then you’ve got all of that progress to make over again,” said Tina.

“I’ve found a balance that I can maintain and that’s key with me.”

Luchia Robinson

(This is a revised version of the article, which was first published in Dec 2016)

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