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To My Partner Who Has Watched My Health Decline

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We were only 13 and 14 when we got together. It was a bit of a whirlwind, if you want to call it that — we went from barely knowing each other to being in a relationship. Yet, we’re still here, nearly eight years later, and I’m nearly 21 and you’ve already turned 22. You were there when my condition first made itself known — though then, of course, we didn’t know what it was. That was when there was still hope I might recover completely.

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

The worst thing was, I thought I had. I had my surgery on my left knee, and everything was fine. It subluxed still, but it was nowhere near as bad as it was. Then my right knee started, and the same thing happened. I still had hope. We still had hope. You were there, by my side, helping me through what was happening.

Of course, we now know I am a sufferer of an incurable condition that isn’t going to go away. It impacts our daily lives, from where we can go to more intimate aspects of our lives. You never complain. You are attentive, you are caring and you are wonderful. You have taken on the role of not just my partner — you are my rock. You are my constant through the changes I am currently facing. You listen when I tell you it is not easy. You help me in any way you can when I tell you I am in pain. You have ways of making me feel better that only you can do.

We are both learning, still, and I think we always will be. I am learning to accept and come to terms with my body’s limitations. You are learning what life is going to be like with someone whose health may or may not decline further. It is an uncertain future ahead of us, but I am so, so happy it is you who will be by my side as we make this journey through life. 

I am thankful for many things. If I could list just some of them, they would be thus:

1. You never give up on me. You always try and help me no matter what I need you to do. You understand there is a reason behind why I am asking you to do something — even if it is, perhaps, something as simple as checking if the bathroom is free, and I have asked you to do so because at that moment, movement is just too painful to contemplate. You do these things I ask of you and you do not complain.

2. You are fully accepting of the situation we are in. We do, of course, hope to live together, marry and eventually have our own children. However, you are fully aware that I may or may not be able to have my own children, depending on the way my body may decline. We have many uncertainties in our future, and you are fully prepared to deal with them as they happen.

3. You are ambitious. I value that in you. You put the same vigor into looking after me and making sure I am OK as you have into your studies and your future career.

4. You have seen me go from being a dancer to not being able to do anything at all, and yet you still love me despite watching me become more unable to do things. You have dealt with this a lot better than I have — I still cannot quite come to terms with not being able to dance again. You are rational and sensible, and you know that in the toss-up between hospital trips every week to losing something I love, I did in fact make the right decision. Even if I don’t like it.

5. You are honest. You tell me when sometimes I just need to pull my socks up and get on with things, for example my university work. I am not always enthused about doing it, but you know I have it in me and always encourage me to reach deeper for the energy I used to have, that you know is still deep down somewhere.

6. You are, however, always a shoulder to cry on. You will hold me when I am upset about my condition. You hold me when the pain has gotten too great and I am unable to hold it in any longer. It is truly the best medicine sometimes.

Ehlers-Danlos syndrome are three words that will haunt us for the rest of our lives, but we will always prefer three others: I love you.

Originally published: May 19, 2016
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