5 Difficult Aspects of Ehlers-Danlos Syndrome (and 6 Ways to Cope)

I have hypermobile Ehlers-Danlos syndrome (hEDS), a condition which has an impact on almost everything I do. EDS is something people are born with; it’s caused by a genetic defect in one or more types of collagen in the body. Collagen is part of the connective tissue that is present in most tissues in the body and is commonly thought of as the “glue” that holds the tissues together. Because of this, EDS can cause dysfunction in all the tissues and organs in the body that contain collagen. Tissues rich in collagen tend to be most severely affected such as tendons, ligaments and the skin.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

EDS causes the tissues that contain collagen to be much stretchier than they should be. Because the ligaments, tendons and muscles are too stretchy, this causes the joints in the body to be unstable. In some cases the joints will repeatedly dislocate, causing joint damage over time. All the muscles must work much harder to keep the joints in place and to keep the body in whatever positions it is in. Even the neck has to work really hard just to hold the head up.

Symptoms are varied among those with the condition but there can also be dysfunction in the gastrointestinal tract, heart, bladder, uterus, blood vessels and skin. Another difficulty with this condition is that since it is relatively rare in the general population, it can be difficult to achieve a diagnosis. (The hypermobility type, which is the most common type of EDS, affects approximately 1 in every 10,000 to 15,000 people.) I was not diagnosed until I was 28 years old even though I had struggled with the symptoms since birth.

It is also difficult to find specialists in the field to aid in learning about the condition and how to manage it. There is no specific treatment for EDS and the symptoms can be managed but not cured. Management of EDS is lifelong and everyone with the condition has different symptoms which have different degrees of severity and affect different systems in the body. Unfortunately, EDS does tend to worsen throughout the life of the individual so the future is often uncertain.

I would like to share with you the most difficult aspects of living with EDS:

1. Fatigue.

Because the tendons and ligaments are so much stretchier than usual, the body must work so much harder to perform tasks such as sitting and standing up and walking. This causes these tissues to become fatigued much more quickly and the body becomes tired much quicker than a healthy person’s body would. This means those with EDS can struggle performing relatively simple tasks and need to be careful not to do too much. I have found it particularly difficult to learn what I can and can’t do and learn to pace myself. It is most difficult to say no to activities you would love to do but that would either not be good for you or have a lasting detrimental effect. The effect of doing too much for me would cause a flare-up of my condition, causing me increased pain and fatigue. This can mean I need to be in bed for days or weeks to recover, depending on how much I have pushed myself. As well as physical fatigue, there is also cognitive dysfunction including memory loss, difficulty thinking and sleep problems.

2. Pain.

I struggle daily with various types of pain including joint pain, muscle pain (due to spasms), nerve pain and severe headaches. This pain often cannot be controlled with medication alone and is something I am continually learning to deal with.

3. Isolation.

EDS is known as an invisible illness. This is because it can be impossible for others to tell you are struggling. Most people can have empathy for someone who has broken a leg, had an operation or has a condition they are familiar with or can relate to, such as a senior person with arthritis, but a 28-year-old with chronic pain and severe fatigue who on the worst days can hardly move is not something most people can comprehend or even sometimes believe. Some people believe it is psychological. Therefore, many of us with EDS are experts at concealing our discomfort, difficulties and pain to avoid evoking pity and sometimes disbelief and rude comments from others. When I was diagnosed, I didn’t want to tell anyone except close family about my diagnosis at first. Even if you do confide in others, it can still cause isolation due to them struggling to understand what you are going through. Isolation from family and friends occurs due to missing special occasions and events and being unable to partake in certain activities. Most friends drift away as they don’t know what to say or do around you. The important thing to remember is that the real friends will stick by you.

4. Uncertainty.

A life with EDS is uncertain in many ways. I don’t know when my condition and symptoms will worsen and how bad they will get. This can be a terrifying prospect for those with the condition. Because of this, it is important for me to live one day at a time and make the most of the abilities I do have right now.

5. Grief.

I found this the hardest aspect of my condition. As my condition worsened, I went through a­ grieving process. I was grieving for the old me. I was grieving for all the dreams I had that I was now unlikely to be able to achieve. I was grieving for the activities I would no longer be able to do. But most of all, I was grieving for the person I had wanted to be.

How to Get Through the Bad Times

It is important to mention that there is a way through the overwhelming feelings that can accompany EDS. Everyone’s journey is very different but here are a few of the ways I changed my attitude and started becoming more positive about my situation.

1. Take it one day at a time.

When everything just gets too much and is massively overwhelming, don’t try and think more than a day at a time. Just plan what you need to do one day at a time to improve and focus solely on that. It gives you something to concentrate on and quells the panic that can emerge when thinking about the future.

2. Focus on what you do have.

Write a list of everything positive you have in your life and focus on this. Even if you think there are none, there is always something positive you can pick up on. I write in my diary one thing I am grateful for each day. This helps me stay focused on the positive aspects of my life rather than focusing on all the things I don’t have.

3. Set small, achievable goals.

It is important to feel like we can all still achieve something. It may not be what we always wanted, but it doesn’t mean there’s nothing we can achieve. Depending on your condition at the time, it could be anything from managing to get out of bed to doing the dishes or going for a walk.

4. Do activities you enjoy.

Make sure you take time to do things you enjoy doing. If like me, you find yourself unable to do the things you used to enjoy, so you find new things to enjoy that are within your capabilities. When I was housebound for a long period, I started learning to draw. This was relaxing and enjoyable and I also felt as though I was still managing to achieve something which boosted my self-esteem and self-worth.

5. Be kind to yourself.

This is so important. We go through so much more than most people can understand and yet we still seem to beat ourselves up about pushing ourselves too hard or missing out on events. We must be kind to ourselves – living with a chronic condition is a huge learning curve and we cannot get everything right. We need to show ourselves some self-compassion and be gentle with ourselves.

6. Mindfulness.

This may not help everyone but I have found learning to practice mindfulness to be hugely helpful to my recovery. There are now a lot of books and phone apps you can use to learn all about mindfulness and how it can help you. It helped me get out of my head and stop worrying about anything and everything that worsened when I was unable to work.

If you have a friend or family member with EDS or any other chronic or rare disease, it can be very difficult to know what to say or how to support them. The best thing you can do is to research the condition thoroughly so that you understand what they are going through. Don’t say to them, “You will feel better soon,” and try not to get annoyed if they have to cancel plans with you. Just be there to empathize and provide support when needed.

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Thinkstock photo via vikiri.