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Why There’s ‘No Secret’ to Caring for Someone With a Chronic Illness

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I’ve never experienced truly knowing someone with a chronic illness before. I had family members pass away from cancer, however I was not remotely close with them in any way. I’ve had relationships come and go just like any other human being.

Then I met him. I was hooked.

Soon after we met he informed me about his illness. I became instantly curious before I even knew what it was. He told me it was gastroparesis. I didn’t know what it was at first. He explained very few details and symptoms about it, so I began doing my own research. I didn’t disbelieve or think that he was exaggerating. I didn’t say, “Show me your scars,” or try to make light of the situation. I just listened and tried my hardest to familiarize myself with his condition. But that didn’t stop me one bit from continuing to evolve our young relationship.

After a short bit of time, Scott became ill for the first time since we’ve been dating. He was hospitalized for about four days after excruciating pain and severe nausea. I found out by his mother, who contacted me on the first day he was there. She told me not to try and visit for he didn’t want anyone to see him.  I didn’t understand. The next day I went to see him. He was not thrilled by any means, however I saw a glimmer of happiness in his face when he saw it was me walking through the hospital room doorway. As he laid there I kissed him on the forehead and asked him how he felt. He didn’t respond. So I began to talk about my day as if it were any other. He opened his eyes and began to reciprocate the conversation. I guess I want to say that I saw the light shining in on him that moment.

That time he was in the hospital would be the first of many. That moment in time was definitely not what I was used to. It was not “normal” for me to be sitting next to my partner in a hospital room hoping he would feel better sooner than later. It wasn’t “normal” for me to worry about how this day would end, if he would get “better” or if he would spend another day in that bed shaking from the pain and crying out in agony. It hurts my heart greatly to witness that every time. I used to think there was nothing I could do. I used to feel helpless. He would sometimes get upset with me because I kept asking him what he needed to me to do. Surely enough, I began to learn about what I was already doing.

I would read about gastroparesis on the Internet and I would read articles people posted on The Mighty. I always looked for articles written by healthy partners of those who are sick to get an idea about what to do or how to act. I haven’t found any. I really could have used a few when this all began. However, I stayed.

The biggest thing I think I do for him is not act like everything is falling apart when he goes through his episodes. Secondly, just being next to him for support helps also. Things like rubbing his back, driving him to the ER, medication reminders and such are normal, everyday things now. However, there isn’t anything extreme I do and there are no secrets I have. The love, dedication and patience I have seems to be all that is required. That gives me the strength to push through the fear and heartache.

When he seems distant, I smile at him and make him laugh.

When he is in pain, I let him know I’m here if he needs me for anything.

When he gets scared he will push me away, I reassure him I’m not going anywhere and I mean it!

When he gains weight, we celebrate.

When people make ignorant or rude comments, I stick up for him.

I am his biggest fan.

Scott told me he didn’t want me to have to write an article like this. He began to get visibly upset. I begged to differ. (He later changed his mind.) This life I chose to have is my normal now and I wouldn’t change it for the world. Things in our lives could be easier, they could also be harder. Nonetheless, we both have a great view on living life that gets us through the toughest of situations. We are each other’s rock and together we will get though anything.

Originally published: June 29, 2016
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