Autoimmune Also Affects Our Loved Ones

Living with an autoimmune diagnosis can be challenging. It is not common to talk about how our loved ones have their own processes, watching you go through all these challenges. From the first symptom, to that scary diagnosis, to hospital visits, painful flare ups, changes in your diet, having to cancel plans, to telling your new lover you have a diagnosis, etc. We all have our beautiful stories of resilience and sometimes we honor those we love. We are so grateful for them, yet we rarely put ourselves in their shoes and see things from their perspective. 

My goal in this blog post…

…is to share some of my relationships and experiences with a severe Lupus and Endometriosis diagnosis. There are so many different relationships that can be affected by our diagnosis. Is it your parents? Your spouse? The person you are dating? Your longtime friends? New friends? Professors? Your pets? All of them!

How can you nurture your established relationships in a way that honors your path of healing?

How can you have the hard conversations with them to create a deep understanding of what is beneficial to both sides?

How can you create new relationships with a clear understanding of where you are at in life and healing? 

How can you hold space for your loved one when you also have to hold so much space for yourself and your healing?

Path to my diagnosis in 2011

My sweet father had always seen early signs of my condition and was very worried about my health. We had looked for answers before but sadly a diagnosis or the right guidance wasn’t available for us until it was almost too late. During my time living in Spain in undergrad, I was having the time of my life. It came at a cost. I got so sick, to the point that my partner at the time had to brush my teeth and put on my shoes for me to be able to go to the emergency room. We got some answers and I was finally diagnosed by a Spanish doctor that told me that I was at the point of kidney failure and needed to be hospitalized ASAP. My father made the hard decision of forcing me to come back home to Puerto Rico the next day (I was transported in a wheelchair). There, we found my first Pediatric Rheumatologist who hospitalized me and changed my life forever. 

To be honest I have never had a conversation with my father on how hard that must have been for him. It took me years to learn how to navigate the challenges and hard conversations with him in a way that was beneficial for both of us. As years go by you might convince yourself that in other people's eyes, at least most of them, you are the “sick/ill” friend, daughter, sister, student, granddaughter, niece, ex partner, etc. But in reality, all of your loved ones do learn how to put your diagnosis to the side and see you as a resilient, incredibly strong human being. It is a tough road to navigate. I’m here to encourage you to not push others away and make space for the unconditional love you deserve. 

Friendships

When it comes to friendships and living with an autoimmune diagnosis, it can get a bit complicated. It can be hard for our friends to see us going through a big flare up; sometimes it can make them very uncomfortable and not know how to hold space for you. At the same time, these challenges can make our relationships stronger. 

I have amazing friends and I’m so blessed to have them with me through the light and through the dark. And I’ve also lost amazing friends because I didn’t really have the capacity to navigate hard conversations or didn’t have the time for them because of my really bad flares affecting my mental health and overall happiness. I miss them very much and send them so much love and light. 

When it comes to creating new friendships, I’ve had new friends literally ask me: Why aren’t you eating that? It has also been said to me that I cancel plans too much. And with time I’ve learned how to also navigate my friendships in a way that they don’t feel like I’m a flaky friend or someone that doesn’t want to go drink wine and devour a plate of cheese with them. It sounds delicious but that is not what me and my body prefer. And the people that are meant to be in your life will understand this and will co-create plans and fun ideas you can both enjoy.

How to navigate established friendships

Try to put yourself in their shoes. What is it like being your friend? Do they have to hold a lot of space? Do you push them away too much? Are you very needy? Where is your relationship at? I would write down a list with all of my friends and reflect on what each relationship looked like. Some of my friends were far away but they knew how much I loved them. Some of them were very close and we continue to have harmony and balance to this day. I discovered that there were also friendships where I genuinely wanted to work on and nurture more. At the same time, I also discovered friends that fell through the cracks. All of this is okay and normal. It’s okay to let some friends go or reach out to the ones that give you so much joy. 

Schedule time to check in. Remember to also ask them about their life. We are all healing different things. Friendships are a two-way road. Instead of just focusing on the diagnosis and medical visits, you can take time to tell them about the positive things in your life, just as much as the challenges. In my experience with a new business and a new marriage and a big flare, I didn’t know how to make time or space to nurture my friendships. With some of them I learned the hard way that friendships are a two way partnership. I give myself so much grace for not understanding this back then. Not everybody is going to stick around, but you can be intentional with time spent with those who do. 

Remind them how grateful you are to have them in your life. I have friends that I honestly don’t know if I would be here without them. Some of my friends have seen me incredibly sick and have had to take me to the emergency room. They have all innately known how to hold space for me, providing laughter, snacks, and the quality time that my soul yearned for. Gratitude is such an essential reminder and a powerful way to lock in true friendship and loving appreciation. 

If you are experiencing a flare, reach out to them. Let them know that you are okay but that they should be aware of what you are going through. I’ve noticed in my own experience that when we don’t tell our friends what is going on and then they see you in the hospital or a post of you being super sick, it can really hurt them. I usually write a message I can copy and paste to all of my close friends to keep them in the loop. 

It might be really hard for them to see you suffering. All of my friends are very different and have beautiful personalities. One of my good friends, Victoria, is one of the most loyal friends I’ve ever met. I can call her my ride or die 100%. Victoria has a beautiful heart and because she is one of my most newest friendships, I got to learn how to explain to her how I was actually going through really bad flares and that a friendship with me might look a bit different. Victoria is that friend that gets incredibly worried about me but always finds the strength to hold space for me and do what has to be done in acute situations. Victoria always makes sure that I have good coffee and food when I’m hospitalized and knows the right things to say when I’m about to run away from the hospital doctors. We have both learned how to navigate our friendship in a beautiful way with honesty and so much communication. 

It’s ok to ask for rain checks. My closest friends and I have had the hard conversations of how I love spending time with them but sometimes I need to make the call to nourish myself. They completely understand if one day I need to honor my body and rest or change the plans. If you are currently in pain or going through a flare you can ask your friends to come visit you or just go on a nice walk somewhere in nature. And if you need to cancel, all good friends will understand. 

Sometimes your friendships might be affected. My friend Lauren is such a blessing. However, with her I had to learn how to navigate a sisterly friendship, looking at my patterns that were straining our relationship. We met back in 2019 when we both had moved to the Asheville area with our families. I knew instantly she was going to be my friend but I didn’t know we would be much more like sisters. Lauren and I don’t see each other much, we live far away, she has a son, and I have my small business. But when we do spend time together it is pure quality time filled with unconditional love. Lauren and I stopped communicating around 2021 when we both were going through  deeply painful but healing journeys. After the new year we reached out to each other and had the most beautiful healing conversation I have ever had with another human being. After these loving discussions, we are back to our sisterly friendship but even stronger. I love her so much and she is a huge part of my life and healing journey.

Our romantic partners 

I can’t even start to write this without tearing up thinking of how amazing my husband has been in my healing journey. I wanted to honor him first in this blog post by mentioning him. On the other hand I’ve had very strained romantic relationships in the past where I wasn’t really supported or even understood. I’m a strong believer that we should never let a diagnosis define who we are. I’m also a strong advocate for honesty and clarity at the very beginning of a relationship. This way you can cut ties from those that aren’t really there for the long haul and you can also be grateful for those who are willing to try. I’ve made many mistakes in the dating world and I’ve been awfully hurt in the past. I was definitely attracted to men that weren’t all in when it came to having my back. It took me many failed relationships and many years of growth to learn who I truly am. This has enabled me to have a healthy, strong relationship with a romantic partner even when life gets unstable. 

Let me be very clear. My husband met me when I had no idea what I wanted to do with my life. But I was very clear that I wanted to have a healthy, loving family in the future. The first official time I met Cameron I was shocked that he was attracted to me. He was such a good-hearted man and I had never dated someone that wasn’t “the bad boy.” I was very nervous when we started dating because I deep down knew he was someone I would have deep conversations with and the superficial was not going to cut it. 

On our third date Cameron picked me up at 8 AM to go on my first hike in the United States ever. I was not only nervous of what I was supposed to wear, I was also nervous of how I was going to read this man a letter I had poured my heart into explaining my life and my situation. Thinking about it now, it might look a bit psychotic from the outside, but I just knew in my heart I had to put it all out on the table for us to be able to grow our relationship. After I told Cameron pretty much everything I had been through (bless this man!) he just started smiling at me and basically said: “That doesn’t scare me. I’m not going anywhere.”

Being fully transparent from the very beginning was not the only thing that helped our relationship. Constant communication and going through an adventurous, scary, beautiful healing journey has been amazing to both of our personal growths. In my personal journey, having Cameron’s commitment and strong love was one of the reasons my soul chose to stay in this life. I’ve had to put myself in his shoes multiple times to be able to understand many aspects of his personality, especially when I’m having a big flare up. To be completely real in this blog post, my husband and I had a serious talk right before a big surgery involving my lung. It was a very invasive procedure that required me having many drugs (including an epidural). I nurtured my husband with affirming words, gratitude, grace, unconditional love. I also had to tell him that I wasn’t sure I was going to make it, and what I wanted his life to look like if I wasn’t going to be here.

It is incredibly important to understand that our partners sometimes act out of fear of losing us. There can exist great frustration in that person who is not able to do more. And when we are sick or feeling poorly, it’s hard for us to find energy to hold space for them too. 

How to navigate romantic partnerships

Tell them what you need from them and what you don’t need. My husband is a very strong man with a BIG personality. He is very passionate about health and as many Chiropractors he wanted to do things as natural as possible. It was a very humbling learning curve for my sweet Cameron to realize that he had never met someone in my situation and that my health decisions were a matter of life or death. I had to be very clear and communicate to him many times that what would serve ME best in times of acute flares wasn’t his opinion. It was his unconditional love and support that I truly needed. 

Bring them to your appointments. In our relationship it is very clear that I make all the decisions for my health but my husband is always so supportive. Now we discuss prior to the appointments my fears and my goals. I also give him some purpose on the appointment so he knows that I truly value his feedback and support. In some appointments I just ask him to hold space for me. In other ones like our high risk pregnancy planning, I wanted him to ask all the questions he had. My husband knows all of my doctors and holistic practitioners and it’s been incredibly healing having him by my side on some of these appointments. 

Communicate your health goals. This is a tricky one. As we are human individuals with different paths, asking your partner to help you achieve some of your health goals is sometimes unrealistic. In my case, I had to finally sign up for a Pilates class twice a week and pay in advance to commit to some sort of exercise. I communicated to Cameron that this was something that my intuition was telling me to do and asked for his support. I have a personality that communicates through action. When it comes to our home, since I am the main one cooking almost every day, my husband has gotten to see how both of us committing to a healthy diet creates wellness not just in my health, but in our marriage.

Ask them their biggest fears. I don’t know how deep your relationship goes but in our home we are BIG on speaking our truth and being vulnerable. I always make space for my husband to feel heard. At times when he is acting a bit cranky I know that it may be because he has so much on his plate or because he is frustrated that he can’t help me more. Once you get to the root of the cause in conversations, and not judge them, all of their fears might start making sense to you and you might be able to understand them more. Everyone feels more settled and safe after these nonjudgmental conversations.

Nurture and romanticize them. Learning how both me and my partner have a masculine and feminine side has been truly amazing to our partnership. I believe that we all need to nurture both sides of ourselves. In our journey, I learned that my husband also wants to be nurtured and to receive. This man has held incredible space for not only me but also hundreds of his clients in our Chiropractic life. He loves receiving home cooked meals, surprise dates, planned adventures, scheduled pedicures, coffee dates, etc. When I do have the energy, I love providing these things for him. 

More to come in the healing journey and healthy relationships…

I know that as I heal and grow into the woman I aspire to be, old and new relationships will have some challenges. And I am very hopeful that all my current relationships will keep flourishing and I wish I can create aligned, new ones also! It is very interesting how life, God, Spirit, literally puts people in your life at specific times. This past week Cameron and I had a double date with another couple we met in Pilates. They are older than us by a few decades, are retired and have a beautiful relationship. At dinner the conversation came up about us not eating certain things and abstaining from alcohol. I felt very comfortable sharing with them about my diagnosis and our healing journey. They are both retired PA’s and I felt so amazingly encouraged by them when they said they are also on a healthy lifestyle journey. We quickly knew we were going to become really good friends. 

The more open minded I’ve become and the more I try to place myself in my loved ones shoes, the more I’ve learned that it does not have to be that hard. Creating new relationships, nurturing established ones, setting boundaries with some, creating clarity with your partner, it all can happen very simply as long as communication is healthy and clear from both sides. I hope this makes you feel like you are not alone in this journey. 

Please feel free to reach out to me if you have any other specific questions you would like for me to blog about. 

So much love,

Dr Natalia