My Struggle to Feel Deserving of Love as a Woman With Chronic Illness

Since I got my life-changing diagnosis of Ehlers-Danlos syndrome (EDS), I have written a couple of English pieces about my journey to diagnosis and about my life with Ehlers-Danlos syndrome. I found writing to be my best coping strategy. Raising awareness and helping other people to not feel alone is the best I can do in my situation. But I have not always been like this.

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

I’ve decided to take another step and write about a very personal and emotional topic for me: how I struggled with accepting my disease and myself, and why I thought I would not deserve to be loved.

My really bad symptoms developed a couple of years ago. At that time I was very happy with my life. I had just moved into my first apartment with my long-term boyfriend and found a great job as a lab tech. I was a strong, independent, athletic and self-confident woman in my mid-20s. And like a lot of young women, I had plans for my life. Actually, I planned my whole life 10 years in advance. I did not expect anything unusual. Just the normal things like earning my own money, having a career, marrying and then later, when I had built a foundation, having a family. Everything looked like this would happen soon.

But then my life turned upside down. My EDS symptoms started with a severely unstable cervical spine. From one moment to another I was bedridden. I had no idea what was happening and I was scared to death. Back then nobody knew what was wrong with me. Doctors did not believe me even though I had a nightmare of neurological symptoms, such as trouble walking, difficulty breathing, numbness of my arms and legs, blurred vision, dizziness and much more.

Time went by and the happy woman I was before did not exist anymore. Since no doctor would believe my debilitating symptoms, I started to doubt myself. I cried a lot. I was not really living anymore. I did not know how to accept my disability and I just wanted to be the woman I was before.

My boyfriend was used to going out with me a lot. We played volleyball together and went out to meet friends pretty much every day. Basically everything we did together had something to do with being active. But now I could not even leave my sofa anymore. I started to give up and he had no idea what to do.

My whole life plans were gone. I lost my job, and we later lost our apartment. I needed help with every little activity and wasn’t able to care for my own needs. I guess it was too much for him to see me like that. I was always the strong woman and now I could not be anymore. After two years of being sick, we broke up and never talked again.

I wasn’t sure how I felt when he finally went away. I knew it was coming for a long time and I was just waiting for the moment to happen. I changed. A lot. I was not even very sad about the end of our relationship. We had been together for five years but the last years were a burden for him and very stressful for me. I always had the feeling I would stop him from living his life, and he probably felt responsible for me. So when he went away I was relieved. Now I didn’t have to feel bad if I wanted to be weak, if I couldn’t go out or if I sat on my couch in my pajamas the whole day. Now, I was only destroying my own life and not his.

I started to think about my life and how I could be happy in a different way. I had no idea how this could work. My plans to marry and to have a family obviously were over. I was very sick and had no medical help in any way.

While I was trying to improve my health and find doctors all around Germany, the lives of my friends did not stand still. They got married, had children, built houses and lived happy lives. As much as I tried to be happy for them, I was jealous at the same time. How could everyone live the life I always wanted? Again I felt bad for my thoughts. How could I be jealous of the happiness of others? What kind of bad person would think those things? But it hurt so bad.

There were many things I always wanted to do, like learning to dance or traveling to foreign countries, but I had always thought it wasn’t the right time. I realized there is no right time — I should have done all these little things when I was still able to do so. Now it was over. I was probably not able to do them anymore.

I became more and more frustrated while my health got even worse. I felt useless and missed the sense in my life.

When I was pretty much the worst me I could have ever been, a great person stepped into my life. My computer was the only way to stay up-to-date and socialize with other people, which is how I started to chat with an ex-colleague from a time when I still worked.

Quickly I fell in love, but felt like I was not worthy to be loved. I mean, I had gained a lot of weight and had no money, no job, no apartment. So what did I have to offer?

I always defined myself through performance, whether it was volleyball, my study or whatever I could be best at. But now there was nothing left. There was only me. There was nothing I could have defined myself through other than my soul.

I never thought someone could just love me instead of loving what I was doing. I thought I would not deserve to be loved, would make him unhappy and could not give him what he needed. I did not even ask him about his opinion. I decided I was not worth it. I thought nobody could handle a woman with this kind of a disease and no way out — no cure or even a clear diagnosis.

I had to learn again why I deserve to be loved for the person I really am. Actually, before I became sick, I did not know the person I was.

His love helped me to find my true self. My self without makeup, not pretending to be a strong, tough woman. He taught me how to accept me, just me. I found out I don’t need to be strong all the time. I don’t need to define myself through any performance.

He taught me to think big and to always want a little bit more. In fact, he was the one who put the remaining pieces of me back together, so I found the strength and finally got a diagnosis after four years of walking through the dark.

This diagnosis was a lifesaver. Finally I knew what I was fighting against and could handle it far better. Now, with the right person on my side, everything seems possible. I got my strength back, I found a way to love myself and I decided to accept my disease and to make the best of it. Finally I can say that everything I was going through made me a happier person. Yes, with all my diseases and disabilities I can say I have never been happier before.

I developed a lot of new skills and found out there is always something I can do. We found some hobbies we can do together and he supports everything I do to raise awareness. I found a new purpose in raising awareness and he is proud of me, especially in how I handle my disease.

I learned my disease does not define me; my disease does not make me a less lovable person.

Actually, in some ways my disease made me a better person than I have ever been before.