Being in a relationship isn’t the easiest thing in the world. You have your fights, your “I love you’s,” your laughs, your cries, your “I’m sorries,” and your “Can you sort my meds?” No? Doesn’t sound familiar? Well, for a spoonie with an autoimmune or chronic illness condition, it’s all too real.
I have lupus, a chronic autoimmune inflammatory disease that can affect any part of my body at any time. Lupus makes my immune system attack its own tissues, mostly when I need it the most. Many of my days are spent trying to remember basic information, battling mood swings or trying to stay away from foods that will cause me to flare.
Flare — when you have a relapse in your disease which causes you experience sh*t ton of pain.
For the most part, I have figured a way to manipulate my disease so it works for me, mainly by maintaining my diet and managing my stress. But, there are some things you can’t control. For instance, anxiety attacks that send me into a panic, crying spurts no apparent reason, memory lapses at a drop of a dime, and decision making becomes a difficult milestone to conquer.
Alone, these things may seem like a difficult task for one person. But when introduced into a relationship with a significant other who has no hands-on experience in managing invisible illnesses, it can become quite a burden for someone who does not understand.
And I say burden lightly.
In my relationships I have encountered a number of uncomfortable situations, from breaking down the elements of my illness to crying because I thought I misplaced my earrings. When you enter into a partnership or a friendship you tend to learn what works and what doesn’t. Here are some of the things I took note of during my journey of finding myself and finding someone who understands and empathizes with my health.
1. We deserve it, too.
Don’t you dare think you don’t deserve love because of your condition. Because that’s exactly what it is, a condition — it’s not what defines you. It took me a while to understand that it will take a strong person to love me, but I still deserved love just as much as anyone else. We often feel hesitant and want to stay away from potential partners. I have come to realize that… yes, we should in fact be hesitant. We have been given a curse and a blessing. The person that sees it as a blessing is the person we want by our sides. So don’t hold out just yet. Get funky, see what’s out there. You might find your perfect meal-planning, pill-organizing and understanding significant other.
2. Let them know what’s up.
For many people, the thought of sharing their personal health makes them cringe. The words “I’m sorry,” “You look fine” or the famous “I know what can help” causes many of us anxiety. But, when we are interested in someone, it is a little different. I have had “situationships” (not a legit relationship but still interested in the person enough to explore the possibilities) where I have shared my health too soon and caused a halt in our communication. A lot of things come into play when deciding when to tell someone about your health, like… Do you guys have a soulful connection? Is it long-term? Is it a booty call? Is it a “I don’t really know what’s going on but I like this person” type of thing? Every possibility has a different response (unless you have a very, very serious condition which is essential that you tell them ASAP).
But in the case that your condition is being managed and you have identified the significance of your situationship, I think you should pace yourself and save your valuable information for someone who isn’t just checking in and checking out. We are built to fight everything that is thrown at us. We deserve someone who is strong enough to withstand such life-changing information.
3. Now you’re in…
So now you’re in a relationship and everything is going good. By now you may have had a few flares, anxiety attacks and arguments about why you respond the way you do. Sometimes we honestly can’t even give them an answer. I know personally have trouble trying to figure out why I did something or what we were arguing about the day before. It is important for us to understand that this is a new life for them. As hard as it is for us to let them know what’s going on with us, it’s just as hard for them to comprehend. Sometimes we have to break it down to them and say “Hey, there will be constant changes. Yesterday will never be like tomorrow.” If that’s a hard pill for them to swallow tell them to think of it as “spontaneity.” We may live like every day is our last (because we have no choice) so make sure you let them know that’s what you need in a partner. A ride or die! It’s critical in any relationship to have open communication even when it’s uncomfortable. As long as that’s consistent, everything else will flow.
4. What a spoonie wants, what a spoonie needs…
Whatever makes you happy and set you free cuz’ we need someone to understand us (I hope you sang that just like I did!). “Understanding” is just the cusp. It gets a lot deeper depending on the type of person you are. Are you an empath? Do you work? Do you have children? How does your illness affect you? All these questions come into play when deciding what kind of person we need standing by our sides.
If you’re like me and have a hard time communicating what you’re feeling because you feel bad about ruining plans, having pity put on you, or just don’t want to make people uncomfortable (I’m getting over it!)… We kind of need mind readers. I know, that sounds absurd. But you’ve seen those couples where they don’t even have to speak they just know. It’s actually a real thing called “telepathic love.” We need someone to be able to read our body language, understand our cues when it’s time to leave a dinner party because you ate something shady, or when you’re having a great day and you want to seize the moment. Being spoonies, we also need support in our endeavors and encouragement when we decide to get out of bed. We need that boost that inspires us to do our yoga and eat a healthy breakfast. It’s the little things that matter to us!
5. How to love a spoonie
If you’re reading this on behalf of a loved one or trying to wrap your head around the news that the person you’re with is battling an illness: First a foremost, kudos to you for taking the time to do your own research. That shows a lot of courage and says a lot about your relationship with the person. I’m taking it as if you’ve read this entire article before scrolling down to this section, so you have an an idea of what a spoonie is looking for in their love life. For the words I have failed to express to my past partners, I will bestow on you.
Please remember that I wake up every day hoping that I’ve been living a dream.
Please remember that I never wished to place my hurt onto your shoulders.
Please remember that when I forget, to be patient and remind me.
Please remember to make me smile when I am not feeling good.
Please remember to understand I don’t mean to flake on our plans.
Please remember that I do love you, and that the touch of you may hurt.
Please remember to anticipate what might trigger my illness.
Please remember that sometimes I am not in control.
Please remember that I am strong and stubborn and may need to be tricked in order to be helped.
Please remember that sometimes I lose hope and I need you to continue to love me even at my worst.
Please remember that I cherish you and all you do for me and will try my best to keep that in mind.
Mindfulness is the key.
So now we’ve either come to terms with what we need or verified what we already have is perfect. Always remember to not let your hurdles of health keep you away from the possibilities of a lifetime of love. We are not built to fight by ourselves!