Living with osteoporosis

One out of 3 women and one out of 12 men suffer from . From an "old ladies disease", osteoporosis is now looked upon as a serious epidemic not only in Europe. You do not have to be old to suffer from osteoporosis. Men and women in their twenties, thirties and forties have been afflicted with osteoporosis, although it is more usual to women in their fifties and later.

People with osteoporosis suffer from this chronic disease in various ways. Some may seem more important than others but healthcare workers should take all serious. Healthcare workers should be aware of the various problems sufferers have and should be able to advise them how to cope with their problems.

The medical problems of people with a hip fracture or even a forearm fracture are well known. All fractures are painful! The hospitalization, the loss of independence and the sometimes forced move to a nursing home is a devastating experience. Spinal fractures can cause excruciating back pain for many years before they are even diagnosed. People with spinal osteoporosis have problems, which can be divided in medical problems and personal problems:

Medical problems

• The neck becomes weak and the head falls forward – neck and back pain.

• The vision is impaired, because of difficulty of keeping the head up. Especially with bifocal glasses the vision is extra impaired.

• The bones of the spine crush together.

• The spine curves.

• Loss of height.

• There is less room for the lungs, so breathing is difficult.

• Because of the loss of space under the ribs the tummy bulges.

• Abdominal pressure: urine incontinence.

• Pain in a part of or the whole of the back. Pain is very individual, some sufferers feel little pain, whilst others suffer from it seven days a week.

• Due to the physical changes it is harder to keep one’s balance

Personal problems

• Loss of independence.

• Fear of falling down and new fractures.

• Older men and women tend to stay at home, so they need not dress up.

• Social isolation.

• They can only see ‘half a face’ in the bathroom mirror.

• The kitchen cupboards are to high, but they are afraid to use a step-ladder.

• The normal daily routines, like using the toilet, taking a bath or shower become tasks they have to find courage for.

• Clothes don’t fit anymore, skirts; dresses and coats become dangerous objects one can stumble over.

Some personal remarks from men and women calling our help-line:

"The worst is the image people have when they see me. That bent back of mine!. When I look in the mirror I do not recognize myself. I keep thinking: that's not me."

"Asking neighbors or relatives for help. Disabled in doing things for myself. It’s so frustrating."

"It takes me more than an hour to get dressed in the morning and what for – I never get out anyway"

"My wife is in a wheelchair and it is so frustrating that I cannot carry her or help her when needed."

"It took the doctors 15 years to find out that I (a man of 50 years old) have osteoporosis, they all thought it was a ‘women-only’ disease."

"I’m so sad that I cannot walk anymore since my hip fracture"

"I haven’t been out for years, I’m afraid to fall and break something again"

"You wonder: Do I really have to go to a nursing home?"

"I feel sentenced to jogging outfits and large sweaters, nothing fits anymore – all my normal clothes are too tight or ill-fitted."

"Before I had spinal osteoporosis I enjoyed shopping and buying new clothes, now I am ashamed to show myself in fashion shops so I haven’t bought new cloths for years."

"People without spinal osteoporosis have no idea what it means to be a sufferer, ok, your 15 cm smaller, so what!"

Sufferer support

Next to the necessary medical support, people with osteoporosis need personal support and understanding from healthcare workers, family and friends. People with osteoporosis deserve it to be taken seriously with their medical and personal problems.

What can be done?

• Advise them to exercise - with or without the help of a physiotherapist - to improve their self-confidence in walking with or without a walking aid.

• Help them to prevent falls – most falls occur at home, while most people think their home is safe. Most Osteoporosis Foundations/Societies have lists how to improve the security in and around one’s home in order to prevent falling.

• Check their vision – because of the difficulty of keeping their head up the vision can be impaired. This makes people insecure and more likely to lose their balance and fall.

• Inform patients whom you prescribe sedative medicines that those products have a muscle relaxing influence. So patients who use sleeping pills should be warned that a nightly visit to the toilet could end in the hospital!

• Make osteoporosis-patients aware of the possibility of sufferer support from the local or national Osteoporosis Foundation /Society. Sufferer support means one can talk to other men or women with osteoporosis. Somebody who knows what it is to be a sufferer.

• Give them the address of the local or national Osteoporosis Foundation /Society for more information. It usually gives them the feeling ‘they are not on their own’. There are booklets available on Prevention and Treatment, How to cope, Fashion tips and advises, Corticosteroids, Hormone Replacement Therapies, and Coping with pain resulting from osteoporosis etc.