**This article is not only for those of us living with chronic illnesses, but also & especially for our loved ones! Please share it with the important people in your life 🙂 **
If you Google the definition of the word relationship, you’ll see this:
Relationships make up our entire lives, as we are inextricably connected to everyone and everything around us. We are mothers, sisters, spouses, partners, friends, and more. But these connections become frayed and complicated when you add in the physical, mental, emotional, spiritual, and financial effects of autoimmune disease. The following are 7 ways in which autoimmunity impacts relationships and what YOU (our loved ones) need to know about it:
1. It’s hard for us to ask for, give, and receive help.
It is human nature to seek independence. When we are born, we literally need other people to help keep us alive. But we go on to spend the rest of our lives fighting for independence and freedom. So when we are diagnosed with (or in the process of receiving diagnosis of) a condition that affects our independence, it can be devastating. If you’re the loved one of someone with an autoimmune disease, please don’t take it personally if we push you away and refuse your help. We’re working on it, I promise. In the same token, we want to give help to others as well, but that can also become more challenging, making it even MORE frustrating for us! And then, even when we muster up the courage to ask for help, RECEIVING it gracefully can be another whole story. I promise we are always grateful, it’s just hard to be vulnerable.
What you can do as our loved ones: Initiate a conversation asking how you can help with a specific task that we might be struggling with. Be proactive and catch us when we’re in a calm place, not necessarily when we’re in the middle of said challenging task, ready to throw things across the room because we are frustrated. And whatever you do, don’t give up on trying to help us. We really do want your help, I promise ; )
Our pledge to you: We will seriously try to ask for help. Like, really ask. We know that this requires a lot of self-awareness and humility, and we’re always working on that!
2. we have a perpetual feeling of “not being good enough.”
We don’t feel like we’re good enough friends. Or wives. Or moms. Or coworkers. No matter what we’re doing, we’re just not good enough. All of us humans struggle with self-worth. We are always our own worst critics and judges (why do we do that?!)! But add a chronic illness into that mix, and you can get a serious self-doubt concoction. It is draining to never feel quite good enough. It’s also draining for you guys, our loved ones, to see us beat ourselves up when you see how awesome we are. Yep, we know that. We see you do it, too, because we ALL do it!
What you can do as our loved ones: Remind us of why you love us, but also hold space for us to just be okay with feeling however we are feeling. This is a vital skill for relationships, and we want to be able to do the same for you!
Our pledge to you: We will work on loving ourselves! When you tell us what you love about us, we will do our best to take it to heart and fully receive the compliment you give instead of just brushing it off.
3. Communicating about our chronic illness can be challenging.
Sometimes chronic autoimmune diseases have symptoms that are pretty cut and dry. Most of the time, however, this is far from the truth. Many of us living with autoimmune issues have been more than frustrated at one point or another by random symptoms with little to no patterns. We don’t know exactly when they’re gonna pop up and that makes it really hard for us to tell you about what we’re going through. You also have to realize that we have normalized pain and symptoms. Sigh. For most of us, feeling crappy is just our normal operating mode, so we often forget to tell you that we’re feeling crappy until you do something that makes us feel more crappy or say something that sets us off.
What you can do as our loved ones: Again, just ask. If you’re in our lives (& especially if you’re reading this), it’s because you’re really important to us! We don’t mind answering your genuine questions about how we are doing. What we can’t stand are hollow questions that don’t come from an authentic place (you know…the people who ask “how are you?” but don’t really want to hear the true answer). So, if you want to know how we are feeling or if we seem a bit off, just say something open-ended question like “tell me what’s going on for you right now” and then genuinely listen to and believe our answer!!
Our pledge to you: We will answer your questions! We will open up to you! We will share what’s going on in our world.
4. we have a low tolerance for bullshit.
Seriously, we live with pain and debilitating symptoms most days, so the “ain’t nobody got time for that” sentiment rings true for us for a lot of things. Most of us have fewer relationships than we did before we were diagnosed, and we only keep people around who are really important and authentic. But with this said, we still want to hear all the details about your day!!! We just want the people in our lives to be REAL!
What you can do as our loved ones: Please, just be yourselves! Don’t try to act differently around us, especially if our diagnosis is new. We can smell your lack of authenticity from a mile away, and it hurts. We love you for YOU!
Our pledge to you: We will strive to be authentic to you, too!
5. We can take things too seriously.
When you’re diagnosed with an autoimmune disease, especially at a young age, it forces you to grow up rather quickly. Doctors appointments, tests, more tests, lifestyle restrictions and changes… We tend to have a certain wisdom about us and we have probably been called “an old soul” at one point or another. This can cause some growing pains (or even splits) in our relationships with our peers. We don’t think we’re better than anyone, we just tend to have a widened perspective on life early in life. And we can take things realllllly seriousssssly.
What you can do as our loved ones: Remind us to have FUN! Engage us in something that makes us laugh and reminds us that we have a funny bone. Help us grow and show our playful side by showing us yours.
Our pledge to you: We will laugh and play and have some FUN!
6. Our comfort zones can get in the way of relationship growth.
Part of growing, progressing, learning, and moving forward in all different types of relationships is being ok with stepping outside of our comfort zones. It’s normal for this to be scary, but it is especially so for those of us living with a chronic illness. We have pretty strict physical boundaries – things our bodies can and cannot do. This tends to spill over into mental boundaries – things we’re mentally willing to do and not do. And this can severely restrict our comfort zones! This may impact how we interact with you as you step outside of your own comfort zone.
What you can do as our loved ones: Share your fears with us! Tell us when you’re doing something scary and let us be a part of each step of that process. We will need that same support when it’s our turn.
Our pledge to you: We will do some scary stuff as long as you’re by our sides!
7. Sex with us can be complicated.
Yeah, I went there. Between the chronic pain, skin issues, digestive symptoms and the not quite feeling good enough, sexy enough, or worthy enough, sex isn’t always fun. Ugh. Need I say more?
What you can do as our loved ones: Talk to us about it! Even when it’s not comfortable! Ask us how we are feeling: physically, mentally, emotionally, and once again hold space for us to be vulnerable and open up to you. On the same token, don’t assume that we are necessarily fragile or breakable! Just give us space to talk to you about it and be open to figuring out new solutions as our partner.
Our pledge to you: We will talk to you! We will tell you how we’re feeling! We will be open and vulnerable!
These relationship impacts by no means represent ALL people with autoimmune diseases, but they ring true for many of us. Just like with anyone, don’t make assumptions about who we are, who we’re not, what we’re capable of, or what we want. We just want you to ask, listen, and be a friend, and we want to do the same for you! We are oh so grateful that you’re in our lives!