The Constant Cycle of Anger About My Illness

Anger.

Despair.

Sorrow.

Acceptance.

This is the cycle of grief that occurs when you become chronically ill. You are forced to give up a lot and accept the lack of clarity for your future. Some of us give up hobbies, some of us give up jobs, and some of us give up dreams, but above all we give up the life we had.

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

Don’t get me wrong, you can still have a great life with a chronic illness. I have amazingly supportive friends, family, a boyfriend, and so many people who care about me. I have the opportunity to be a voice in the Ehlers-Danlos community, and I live a pretty good life overall. Some days I feel immense happiness. Those are the days where I realize that I am happier sick than I ever was when I was happy. Becoming ill so young has taught me a lot, and my biggest lesson that I learned was never to take anything for granted. I no longer worry constantly or dread huge life events because I don’t know how much time I have left, and I definitely know how fast life can change.

The next day, though, might be a bad day. The days where you feel like you are among the dying. The days when I am scared to fall asleep because I am not positive that I will wake up in the morning. These are the days where I become angry. I ask “Why me?” or “Is this really what my life has come to?” and the answer is, “Yes, this is my life.” These bad days may turn into bad weeks as you have a series of bad days leading up to one good day. The ratio of good to bad days may turn into 1:30 for a while, but you learn to live with it. You learn that those 30 bad days are worth the wait for that one good day. This is when the anger finally passes.

Then comes despair. You cry every night. You once again ask the question “Why me?” as you cry yourself to sleep. Everything hurts. Your joints, your muscles, your heart as you mourn the loss of what could have been a good day. You realize that it will be better in the morning, but at the moment all you can see is the bad. You blair your music as you try to push through when all you really want is to curl into a ball and die if it will make the pain stop. You do not actually want to die but at an 8/10 it sounds like the best option.

Then comes acceptance. The bad day passes, you learn to live with a new symptom or condition, and you move on. You rework your life and readjust to new challenges thrown your way realizing that you can still live a great life and help others along the way. You are happy, content, and accepting your situation.

What no one ever tells you when you are diagnosed is that you will repeat this cycle constantly. You will develop a new illness, new symptom, or your pain will worsen and you will fall back into anger and sorrow until you reach acceptance. Unfortunately, it is inevitable to live through this cycle many times when you are chronically ill. You will make it out the other side though. Acceptance and happiness are always right around the corner even when the future looks bleak. You will make it through the cycle, and there is a huge community of spoonies right there to help you among the way.

You are loved.

You are cared for.

You will make it.