Is arthritis killing the life in you?

Arthritis empathy suit

Bounding down the stairs, I felt two stone lighter and twenty years younger. It was as if the old me had been replaced by this young lithe person. It was mind blowing!

The change was due to two hours during which I was to experience some of the pain and disability a  sufferer of osteoarthritis deals with every day.

The project

I had been asked to take part in a project from a brand that is really dedicated to finding out what disability can do, how your life can be completely turned over by it and how their product could be improved to really cater for their customers. You’ll never guess who they are!

 

The osteoarthritis empathy suit

I had to wear an ’empathy’ suit for a few hours. It was to simulate some of the difficulties that sufferers from osteoarthritis experience and all I can say is they have all my sympathies. 

Getting dressed: 

Arthritis empathy suit

 

It arrived in a suitcase and it soon became apparent that it had been designed for a much taller person! Still, there was plenty of velcro to help keep all the bits up and goodness there were lots of parts. 

The concept of the Osteoarthritis suit came from extensive research at Loughborough University where they wanted doctors, consultants and health professionals to better understand:

  • The different levels of osteoarthritis
  • How the disease feels and its impacts on daily living
  • The effect it has on different areas of the body.

 

The parts:

 

The suit – As you can see it covers the body completely. Each area (back, front, sides) has various straps, padding, boning, ‘ouch pouches’ (little soft balls that add the effects of swelling and the discomfort it brings). Each side is slightly different. The right-hand to represent the more severe forms of the condition whilst the left is mainly mimicking general stiffness.

Osteoarthritis empathy suit

Osteoarthritis empathy suit

 

 

 

 

 

 

 

 

 

 

 

Osteoarthritis empathy suitNeck collar – This was a wheat bag  which can be heated. It is to mimic the stiffness in the neck as well as the heat that can be generated with the inflammation.

 

 

 

Feet – A ‘bunion sock’ is as it says on the tin. You slip the sock on and then put on the OA shoes. In my case, they were far too big to make walking easy but with some tightening of the straps, it was doable. What it did provide was the feeling of one leg being shorter than the other which can occur with OA in the hips.

 

Arthritis empathy suitGloves – These were horrid to wear. They had a velcro strap across the knuckles as well as beads inside that made your fingers tingle. My hands were certainly stiff! 

 

 

Knees – Boning around the back of the knee plus strapping which really makes moving difficult.

 

Osteoarthritis empathy suitGlasses – These had a tiny pinprick hole in them. Each was a different size to simulate sight conditions such as loss of peripheral vision and age-related macular degeneration. I couldn’t see a thing and certainly would not be able to walk around.

 

The experience

Putting the suit on produced lots of laughs as there was so much material to deal with but as the straps and velcro began to be tightened around my knees and arms, it was a different matter.

  • Bannisters are key! I went up the stairs. This had to be done by putting one foot on the stair and bringing the other up to it. Progress was slow. Once the gloves were on, it became very difficult because I had not realised how much use I had previously made of the bannister. The gloves made gripping very hard.
  • Dressing will be tricky! I got dressed without the gloves on which meant I could do up the buttons which were fairly large. Once the gloves were on, that was impossible. The joints that give you movement were not flexible enough for this task.
  • Cooking is out! I went to the kitchen to fill a saucepan. Forget about filling it with water as I had to use two hands to lift it! I was unable to reach for the plates on the lowest shelf as the ribbing and strapping on my elbow showed just how restrictive reaching would be.
  • The dust will pile up! I tried to use the vacuum cleaner. My hoover is fairly light-weight and certainly easy to use but the suit made it very hard to clean. Do you realise how much you bend when you are using a hoover? 
  • Forget working! Those regular visitors here will know that I spend quite a few hours of each day sitting at the PC blogging. I thought, this of all activities would be OK. Wrong! Sitting was very painful as the restrictions on my knees made getting into a comfortable position impossible. As for typing – no way! My fingers seemed to have shrunk and the tight band around the knuckles mimicking arthritis in my hands meant I couldn’t stretch them across the keys. 
  • Don’t stand behind me! Sitting at the PC, I had very little movement in my neck so that I couldn’t turn round. This would mean no reversing in a car apart from other restrictions.

All in all the experience was awful. I visited my neighbour next door to ‘show off’ the suit but even that was a very restrictive event. I knew of arthritis in hands because my mother had some fingers that were taking on that crooked, knarled effect but I had no idea of the other effects this dreadful disease brings. 

 

The company

Have you guessed which brand has been using this type of simulation suit? It is Stannah! I was bowled over as I had no idea that such research would be undertaken. Stannah has worked with occupational therapists to get their products to the highest of standards for users. They use the findings of tests with the suit to adapt seating and to make sure angles, upholstery and overall design match their values of ‘making life easier for people’. 

My heart goes out to anyone suffering from any form of osteoarthritis even in a minor way. Let’s hope brands and health professionals can continue to work together to improve the quality of life of these folk. and that a cure can be found.

 

stannah-8 

Are you a sufferer? Which activities does it restrict?

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8 comments

  • OA is a bitch! Some days my fingers refuse to type. Pain is a constant companion and my knees, hips and neck now keep my fingers company. I had a bad fall last week, sidewalk met face, and now look as bad on the outside as I feel inside. Some days when I’m in the writing zone, I can barely get out of my computer chair. If I write a long time one day, I spend the second day on the sofa.
    But all is not bad, I still have a few good days and that usually screws me up royally. Why? Because on a good day I do all the things I can’t on bad days and once again I pay for it the following day.
    Getting old is not for the faint of heart.
    So dance when you can! I do. 🙂

  • Oh my gosh. I have osteoarthritis in my hands and sometimes they are too stiff to type. Ziplocs and buttons are the worst as Sheila mentioned.
    Thank you for this post. A real eyeopener. Glad I only have my fingers to whine about. 🙂

  • I had to laugh at the suit but understood instantly how if felt without ever having to struggle into it. I have a mixed connective tissue disease that includes many things. I also have osteoarthritis in hips, knees, back & hands. My hands are the worst because they have begun to limit activities of daily living. I probably cuss out ( in the privacy of home) more product designers in a day than you can imagine – can’t open a damn thing. Who thought ziplocs were a good idea? Or buttons, zippers , etc. lol. In fact, after months of increasing pain, both my rheumatologist and orthopedic doctors are recommending thumb joint replacement, in both hands. I see the doctor at the hand center this morning for evaluation. All I can say for sure is – aging ain’t for the faint of heart. Thanks for sharing the suit.

  • Jacqueline Grima

    Hey Julia, what a fantastic post and great idea for an experiment. I have fibromyalgia, inflammatory bowel disease and am starting with OA in my knees and wrists – this is is a great way to raise awareness of how challenging every day can be to those of us with chronic conditions. Well done!

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