The Advice My Therapist Gave Me About Disclosing My Chronic Illnesses to My Partner

Dating with a disability is difficult for multiple reasons. One of the hardest aspects for most people is the burning question: When do you share it with your potential partner? When I met my now-husband, I wondered the same exact thing. Luckily, my therapist/counselor at the time said something that really rung true to me and gave me fantastic perspective. I want to share with everybody her bit of advice, so hopefully it can guide others in their time of confusion.

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

To make a long story short, I met my amazing husband one night, and for several weeks, we talked every single day. At that point, I was seeing my therapist on how to manage a major transition in my life, and I just happened to meet this wonderful man around that time. I was sitting in her office one day, and she was asking about how things were going. I told her I really enjoyed talking to him, we hadn’t been able to have another real date yet, but I felt a real connection with him. The catch was, I was very anxious because I felt like there was a huge piece of me he had absolutely no idea about.

The longer I waited to tell him, the more attached I got, and the worse it would hurt if he left. Plus, the longer I waited, the more upset he could be at me for “hiding” something. But, if I told him too soon before he got to know me separate from my disability, he could bail before we could know what else we had. And, how much do I tell him? Do I tell him everything? Do I show everything? Do I downplay it? Make it sound worse than it is Plus, he seemed active, and I was scared he would plan a date for us I couldn’t handle, or that I’d try to do whatever he planned and would get hurt and he wouldn’t know how to handle it. Or he would be upset with me when he found out I couldn’t participate. Also, did I really want to be this vulnerable with somebody? It could really backfire, and trying to teach somebody else all of this about me is exhausting.

After going through all of this, my wonderful therapist told me, “You don’t have to tell him your whole life story, you don’t know him very well right now. Yes, you have a connection. Yes, you feel attached and anxious, but he doesn’t need to know everything about you yet. Tell him a little, the basics, and work your way into it as you get closer, but don’t give him information that a stranger doesn’t need to know about you.”

This perspective made a lot of sense to me. She’s right. I felt a connection, I really liked him and I was scared of losing him, but he also was a stranger for all intents and purposes. I didn’t know him all that well, no matter what I felt, and he could do a lot of harm with too much personal information. Plus, if things didn’t progress for some other reason, it really was none of his business.

Within a few days of that advice, I did text him and say, “Hey I’ve got to tell you something, and it may change everything, it may not, but it’s something you need to know before things progress.”

I gave him my diagnoses (or at least a couple of the bigger, more obvious ones): Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), anxiety and migraine, and explained them each to an extent. I also told him I know how to manage them myself and it’s mostly taken care of, but it could affect certain things we do. It was basic information, but what was more important was what I said next.

“Please come to me with questions so that I can explain what’s pertinent to me. Also, you should know that you always have an out, any point in time, that I won’t make a big deal out of it, but I expect some respect the same way that I handled this. I ask that you talk to me whenever you start feeling too much pressure, or when you need a break.”

This type of communication is critical for a relationship like ours to work. Unfortunately, when he started being with me, he became my caregiver inadvertently. That role can be exhausting, and self-care is extremely important.

He told me it didn’t seem like a big deal, and eventually he did come to me with some questions. He said I appeared to know what I was doing, and that I just needed to tell him how he could support me, and he promised to communicate with me in return. As things progressed, he began to see how things affected me and how he could help. He learned more about me, my diagnoses and what he could and couldn’t handle. We’ve learned to adapt certain things, like when I need to sit out and let him do his own thing, and when he needs to push me. I believe I got really lucky with this man, and everybody’s situation is different, so how things are shared and how things progress may go differently.

I still struggle with feeling like a burden, especially when I dislocated my shoulder and we had to go to the emergency room (ER) on the day we were supposed to get married, and, as a result, had to postpone the wedding for a couple weeks. Or, when I lost two jobs in three months and put us into debt. Or, when I have a panic attack and keep him from sleeping. Or, when I slow him down while we are out trying to hike. There’s a million things that make me feel like I don’t deserve him, and that saying “When you love someone, let them go” often comes to mind. But at the end of the day, that’s not my choice. He is choosing to be with me. I don’t need to choose to end this relationship for his “benefit.” He knows he has an out, but he also knows his limits and what he needs — that’s not for me to decide. If the situation was reversed, I wouldn’t hesitate to be the same for him that he is for me, and that’s what I try to remember when I feel like an unequal partner.