When Your Health Restrictions Affect Your Fiancé

Being young and diagnosed with a bunch of chronic illnesses can obviously be very challenging. People can typically image the physical pain that comes with living with Ehlers-Danlos syndrome, the frustration and limitations of having postural orthostatic tachycardia syndrome (POTS), and the hassle of having eosinophilic esophagitis and the extensive lists of food allergies accompanying it. From an outsider looking in that understands the symptoms of these conditions, the physical aspect is generally pretty obvious. Something that may not occur to people lucky enough to not be spoonies, are the issues of self-worth that come with it.

My journey of self-worth and a sense of value has not always been easy. I think that is something everyone struggles with, regardless of health. We all have struggles, we all have adversity, but being diagnosed with a bunch of different conditions, and none of which have a cure, will add a whole new set of struggles. I had always felt more sickly, and shall we say “physically less capable,” than my peers, but didn’t get diagnosed with these conditions until later in life.

I finally got diagnosed when I had just turned 19 and had just started a new relationship. Telling your new boyfriend of three months how much more complicated your life is about to get isn’t a conversation I wanted to have. I wanted to be “normal” and feared he would want a “normal” life with someone who didn’t have any physical limitations. Although I had felt these problems and pains my entire life, seeing them have names made it feel more real and solidified that I was different. I didn’t want that for either of us.

To my surprise, my boyfriend couldn’t have been more supportive. His support continued as my POTS got worse before better, my joints dislocating regularly, and my list of food allergies grew and my reactions got more and more severe. All the while he helped me through it the best he could, and now almost five years later we are getting married soon. I am very grateful to have found someone who doesn’t just see a body that doesn’t work quite right when he looks at me, but rather the complete person I am. That is great, but sadly I know not everyone is like that.

This brings me to the real point of this: People out there will try to assess your value as a friend, partner, spouse, or person in general, and there will be times they won’t look past your illnesses when they do. Despite the unwavering support I got from him, in the back of my head I couldn’t help but wonder if the small percentage of people who only saw my limitations, not all I have to offer, were right. Are the negatives my health imposes greater than what I have to offer someone?

Let’s face it, even knowing there is one person out there that has met you and doesn’t want to bother looking past your “can’t do” list and decides to see you as a burden hurts. Even if you know it isn’t true, it is still disappointing and frustrating. I have been there several times, and I am sure many other people with chronic illness have been right there with me. It can really fuel the doubt, feelings of not being worthy of someone, and highly damaging to self-esteem – even though it is the minority opinion.

Particularly in the past year while planning my wedding, off and on I have had the small, nagging voice in my head wondering if those few people are right. Is it fair that I sign him up for a lifetime of having to accommodate my conditions? Do I really have enough positive attributes to cancel out the negatives? And you know what, I realized how ridiculous the whole thing was. Although these feelings are valid and we have the right to feel them, to think I, or anyone, can or should be summed up by medical conditions is ridiculous.

Yes, I have these restrictions, and yes my fiancé lives with them too, but so what? We have done it for so long, this is what is normal for us, and it works. Maybe he can’t have carrots at home or we can’t go to a restaurant, but I am a good cook and make dinner almost every night that is safe for both of us to eat together. Maybe we can’t go on dates to a park in the middle of summer, but we can stay inside and read comic books together (one of our shared favorite hobbies). Maybe we can’t always go to the arcade because standing at the machines too long will cause me to faint, but we are both always up for a Mario Kart tournament on the couch. Those are just a small fraction of the examples I could list off. And not to mention he is always free to do those activities with friends. We all find ways to work around obstacles. That’s life.

Just because my body works differently doesn’t mean it doesn’t work at all, and it doesn’t mean that I, and the people I love, can’t live lives we enjoy. To let someone so closed minded they can’t realize it have any weight in my opinion of myself or what I bring to a relationship simply makes no sense. No one should be defined simply by their illnesses or conditions, and if someone in your life doesn’t realize that, it is their loss. We should all be patient with ourselves, and at times others, and never let ourselves believe we are less worthy than anyone based off any illness.