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Finding the Strength to Support Myself in My Battle With Illness

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Everyone with a chronic illness will probably say that we only reveal to others what we want them to know and that we are keeping things to ourselves every single day.

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

When you’ve lived for a while with it yourself and related your problems to your closest friends, you begin to realize that you are becoming repetitive and no one wants to hear about the same problems over and over. It’s obvious that these problems are something you alone have to manage and you become an expert at coping.

Each day we realize that these symptoms are just part of the bigger picture of what we have to deal with.

What is really difficult, though, is rationalizing things for ourselves; we are learning all the time about our own bodies. It can take several events of the same symptoms to teach us about our illness so we can then arm ourselves with the skills and knowledge to not be worried if it happens again.

I know I am constantly learning from myself and if I tried to explain it to others it would seem superficial, but when your symptoms control your life you constantly have to evolve to integrate them into everyday living. Others would never understand if you said, “I’m tired all the time, my eyes hurt, I can’t seem to see as well this week, I feel dizzy and nauseous and have no energy.” They might think you are making too much fuss over things, but they have not had to cope day in and day out with such a wide range of symptoms that accompany Ehlers-Danlos syndrome, Meniere’s disease, fibromyalgia, arthritis and Hashimoto’s autoimmune disease. How can they understand if they have never experienced it?

Starting to look at it from this perspective has given me more strength and understanding of other people’s perceptions in a positive way. I no longer look for the support I craved from others. I have developed my own strength and my own coping mechanisms, and most importantly have figured out how to look after myself. Yes, myself – being easy on myself and understanding my own limitations has brought a sense of calm rather than being ever-searching for something that was not there. You see the bigger picture and it is liberating!

From all of this we have to be our own advisors, judges and mentors making rational choices if the symptoms become worrying and don’t go away.

What will never go away though is the need to talk to someone whom you can trust to discuss your worries and try to rationalize if these symptoms happen to anyone else. This is where we should take strength in coming together and supporting each other through any channels we can so we feel powerful in our own journey.

Thinkstock photo via standret.

Originally published: February 24, 2017
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