The Difference Between Accepting Your Illness and Coming to Terms With It

A little over one year ago I was diagnosed with hypermobile Ehlers-Danlos syndrome (EDS). Ehlers-Danlos syndrome is a degenerative connective tissue disorder that has no cure. Unfortunately that means I will never get better, only worse. Even though before this I was still chronically ill, I always held onto hope that one day I would get better. After my EDS diagnosis I had to come to terms with the reality of never getting better.

How does a person come to terms with never getting better, never being healthy, and start to accept it? The answer is simple: You never really accept it, despite coming to terms with it.

The difference between accepting your chrinic illness and coming to terms with it is clear. Coming to terms with your chronic illness is understanding that you will never get better and being able to process that. Accepting your chronic illness is being OK with the reality of never getting better.

Accepting your chronic illness is not a linear process, it is a rollercoaster. One minute you are completely fine with never getting better, but then a flare happens and you cry about how this will always be your life.

With chronic illness, it feels as though you are constantly going through the stages of grief. Denial, anger, bargaining, depression, and acceptance become a constant.

Denial is clinging to the hope that maybe this isn’t real.

“Maybe I don’t really have Ehlers-Danlos syndrome. Maybe the doctor is wrong and I have a curable condition.”

Anger is getting mad at everything and everyone when you start to come to terms with reality.

“I hate my life! I can’t believe I am the one that has to deal with this! Why did no one recognize this sooner.”

Bargaining is the feeling that you will do whatever it takes to make the pain go away.

“If I can just have one day without pain, then I can live the rest of my life with my conditions. If they can just find a medication that helps, I will be OK with everything.”

Depression is the sadness that comes when reality sinks in and you realize what it truly means for your life.

“Why did this happen to me? What did I do wrong? I don’t know if I can keep doing this. It is impossible to live with this pain.”

Acceptance is when you finally embrace your new reality.

“Just because I have a degenerative, incurable condition, my life is not over. I can find new passions such as spreading awareness for my condition.”

The problem is, acceptance only seems to stay for a short while. When the next flare hits the cycle resets and you go through the process all over again.

It is important to realize that it is OK to be unable to fully accept your chronic illness. Just because you will never be cured from your illness does not mean your life is over. When my chronic illness first started I had to give up playing soccer. Soccer was my favorite thing and suddenly there was no way I could play again. With the absence of soccer I discovered a passion to read and write.

Life changes with chronic illness, but chronic illness is not the end.

Getty Image by ajr_images

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

A woman sitting in a wheelchair, holding a cup of tea, while looking out the window.

The Anxiety That Comes With Using a Wheelchair for the First Time

My birthday is coming up this weekend and I’m terrified. Not because I’m getting older, which is scary enough on its own, but because my boyfriend wants to take me to an amusement park – and for the first time I need to publicly defend my invisible disability and stand up for myself to get [...]
beautiful woman in purple dress with long hair standing against sunset background, digital art style, illustration painting

The Role Adaptation Plays in Life With Chronic Illness

In my journey to receive diagnosis, I did a lot of researching. I do not use this word lightly, as I did much more than WebMD my symptoms. What’s “wrong” with me doesn’t show up on standard lab tests. I physically appear well and youthful. I don’t even appear to be in much discomfort… and [...]
A woman outside, looking away from the camera.

5 Non-Glamorous Symptoms of Hypermobile EDS

I have Ehlers-Danlos syndrome (EDS), hypermobility type, and I have noticed it becoming a more popular diagnosis. I believe that it is very under-diagnosed, but I have had several people tell me that since they are flexible that they must have it as well. EDS is most widely known for hypermobility, but a large portion [...]
close up photograph of a butterfly on a leaf

My Mental Illness Does Not Invalidate My Physical Illness

I recently went to my doctor for increased symptoms of fatigue and pain leading to a major decrease in my activity. During the appointment, I asked some general questions to see if there were more treatments I could try, and I informed my doctor of my recent PTSD diagnosis. As soon as that cat was [...]