Independent Living for People With EDS

Living alone with a chronic illness such as Ehlers-Danlos syndrome (EDS) can be challenging. However, there are steps you can take to help achieve independent living.

Learn to manage your symptoms

The first step is to know as much as possible about your condition. EDS is a rare disease and most healthcare providers are not familiar with it. Learning about and understanding your disease can help you make the best decisions about your life and medical care.

Control stress

Having a chronic disease like EDS can cause a great deal of stress. You have to worry about chronic pain and not injuring yourself, as well as financial pressure and feelings of isolation. A recent study found that many patients with EDS have fears about pain, having children, losing their jobs, and being stigmatized. Taking steps to minimize and manage stress can help.

Consider your location

It may be helpful to live close to family members and friends who can help in case of emergencies.

When choosing your housing it also is important to consider what impact your condition will have on your ability to live there. Housing with lots of stairs may be dangerous, for example. You also may want to consider adding adaptations around your home, such as grab bars for the shower and doorknob adapters to make it easier to open and close doors without injury.

Use resources

Living with EDS can make daily tasks difficult. Make sure to take advantage of resources that can help you preserve your independence, such as transportation and housing for people with disabilities.

Find community support to give you encouragement and tips for living with EDS. Several groups are available. These include:

• The Ehlers-Danlos Society
• EDS Canada
• Ehlers-Danlos Support UK
• Rare Disease Connect (Ehlers-Danlos Syndrome Page)

Stay social

It is important to stay involved socially, especially if you live alone. Social isolation can have consequences on mental and physical health even for healthy people, especially as they age. Having a rare debilitating disease can increase those feelings and risks.

It may feel overwhelming to try to go somewhere to meet with friends due to worries of injury and inconvenience due to mobility limitations. In this case, inviting friends and family to your place, or suggesting a location where you feel more comfortable, may be an option.

Consider assistive devices for independence and stability

Making use of assistive devices such as walkers or braces can improve your ability to live and function independently.

Braces and orthotics such as ankle-foot orthotics or ring splints can help keep joints more stable or prevent them from hyperextending. It also may be helpful to have adaptive eating utensils, which may help alleviate pressure or strain on the joints of the hand.

Learn new strategies

Some activities such as lifting objects, reaching for objects, getting in and out of a seat, and opening jars potentially can lead to injury in people with EDS. It is important to learn how to do these activities safely from an occupational or physiotherapist to ensure that you can safely live on your own.

You also may need to look into accommodations from your employer to help you continue to work safely and efficiently. It may be helpful to see what additional benefits may be available from your employer to help you to live independently.

Last updated: Oct. 14, 2020

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.