Let’s face it, getting diagnosed with an autoimmune disease turns your life upside down. From countless doctor appointments, to days being sick in bed, and of course the ongoing tiredness are just some of the new normals. For me it’s celiac disease and although I’m learning to navigate life so I don’t miss out on what I used to love, my life is not the same. Everything from eating out, attending social events, the cosmetics I buy to the trips I take are all different now.
I think it’s really easy to get caught up on focusing how much my life is different and how hard it is at times for me, that sometimes I forget my illness not only impacts me but also my loved ones; specifically my husband. When he fell in love with me I was a healthy young girl (we met in high school!) with no worries in the world. Over the years he saw me struggle with my health, until finally a diagnosis was given. I was scared and didn’t know what the future would bring for me, but I selfishly never stopped to ask him if he was scared. There have been many times we’ve had to cancel plans because I haven’t felt good, or planned our entire trip around making sure it’s gluten free safe and never once has he complained about it or made me feel guilty for it. In fact he continued to date me, marry and love me unconditionally.
In honor of all the incredibly supportive spouses out there living with someone with celiac (or another autoimmune disease), today I’m interviewing my husband Erik and getting his perspective on things. Some of these questions we have never talked about before, so I asked him to be as open and honest as possible.
How was life before my diagnosis?
Life before your diagnosis was a very normal teenage life for the both of us. We ate all the junk food that we wanted, as most teenage kids do. We would go to our favorite Mexican restaurants together, get burgers and fries on the pier at the beach, pizza after football games… the list could go on and on since we were your typical teenagers. But to be honest, things changed way before your actual diagnosis. I can remember like it was yesterday when I knew there was something wrong and different about you. I started to notice that whenever we would go out to eat you would suffer from a stomach ache or not feel good. As time started to pass, the reactions would get worse and it seemed like you always felt sick, not just after eating and trying to figure out what caused the issue started to seem hopeless. I remember you going to so many doctors and they didn’t know what was wrong, and actually told you it was in your head. Looking back I can remember being so frustrated at the situation because every time I would suggest somewhere to eat you didn’t want to go because you were “allergic” to what they served (even though we didn’t know what). I look back on it and feel so bad about how I use to give you a hard time. I wish I was more respectful about how you felt and it makes me sad to think about all the young kids that suffer from celiac or gluten intolerance that are going through that now.
How did you feel when you heard I was diagnosed with celiac disease?
To be honest when you were first diagnosed I didn’t think much about it. I thought all you had to do was not eat bread or certain types of grains and it would be as simple as that. A part of me was relieved that you finally had an answer to why you were always sick. I really didn’t think that it was that big of a deal. I’m not even sure if I knew it was an autoimmune disease at that point. Honestly, even when I found out it was an autoimmune disease, I don’t know if I even knew the severity of what it entailed.
How did your life change after my diagnosis? (positive & negative)
Some of the positive changes came in the form of changing our eating habits. It really made me aware of what goes into certain foods and taught me to read labels, not only for gluten but also to make healthier choices. With having a loved one that has an autoimmune disease it really makes me look at my own health and not take it for granted.
Negatives…well to be honest I try to focus on the positives, but there have definitely been challenging aspects to your illness that I never thought I would have to think about. I would say traveling and lack of spontaneity has been the hardest change. We are now limited to where we can travel, where we can stay, we have to research ahead of time places you can eat, etc. I miss being able to just explore and stumble upon places. Sometimes it feels like we plan our trips (even day trips) around food. But at the same time, I wouldn’t change that for the world since now you’re feeling better!
What surprised you most about living with someone with celiac?
The biggest surprise was how severe your reaction is to gluten. Having to witness what you go through and the process of healing from your reaction is saddening and hard to deal with, since there is no way to really help. Another thing that surprised me is how strong you are (I always knew this, but didn’t realize how often you use your strength!). This is a two-parter. First is your willpower. I’ve never seen you cheat on your diet, even when you’re around food I know you used to love. I’ve heard many times people say to you “oh, come on one bite won’t kill you”. I can imagine this is hard to hear and but you never let that bother you. The second is your overall strength. I never realized how celiac impacts your life so much until I lived with you. It’s a lot harder than people think, but you just do what you need to and keep on going.
You choose to have our house be 100% gluten free, is that ever hard for you?
Transitioning to a gluten free house was hard in the beginning just because it was overwhelming going to the grocery store and trying to figure out what was gluten free and what was not. I remember one time you sent me to pick up a few items and I was at the store for an hour trying to read labels and Google things! Now it’s second nature to me and I couldn’t imagine going back to how it used to be. I honestly don’t feel like I miss out on anything (I’m sure your cooking really helps with that!). Even though I don’t have celiac, I really feel better eating gluten free as well (I do eat gluten when I’m out, without you).
What’s been the biggest challenge?
I would say hands down the hardest part for me is seeing you struggle. Your life has turned upside down and although you know how to mange it now, it’s still a challenge. Just knowing how sick you feel after you get glutened and seeing you lay in bed is hard. I can remember at first your hair was falling out and I saw you one day in the bathroom cry as you brushed it… that killed me to see you.
Also, watching you struggle over the years with the social aspect has been challenging for me. I remember the first time we went to a wedding together after your diagnosis and we weren’t prepared and didn’t pack you food. You held tears back all night as everyone ate freely around you and questioned you why you weren’t eating. You’ve given up a lot and have to worry so much that it saddens me. Each time we go out to eat you have to ask so many questions and are always at the mercy of how the food is prepared, that I can see you stressing. It hurts me to see how people treat you sometimes and think it’s a fad. I remember one time your friend said “I was going to invite you to dinner with us, but figured you couldn’t eat so I didn’t”. Sometimes it’s hard for me to sit back when people say hurtful things like that. It breaks my heart for you because I know you didn’t ask or deserve this. I’ve seen you get so strong over the past couple years and you always seem to be control of the situation, even when it’s hard.
In your opinion, what’s helped us get through the hard times with my health so far?
Being a team has been the key to it all. It’s with anything in life, not just your health. When I’m having a bad day you’re there to lift me and vice versa. Days that I can see you’re not feeling well I try to pick up the slack for you. It’s all about having someone to conquer your fears and stresses… knowing you’re not alone during the hard times.
What advice would you give to another spouse married to someone with an autoimmune disease?
You have to be a team and put yourself in the other person’s shoes. Be open to the other person’s feelings, thoughts, stresses, concerns etc. You have to be there to pick them up during the hard times, but celebrate the positives. Be patient. Getting a diagnosis of celiac or another autoimmune disease is life changing and you really need to remember how hard it is on them.
What advice would you give to a person living with an autoimmune disease regarding their spouse?
You’re not the only one who stresses or has concerns from a diagnosis like celiac. You may be the one who has the illness, but you’re not the only one who is living with it in the relationship. Your loved one goes through every step of the process with you. Also, we don’t read minds so when you’re feeling something let us in. We can only be there for you fully if you open up.
A big thank you to Erik for being open and transparent during this interview! He truly has been beyond supportive with my celiac and every aspect of life. There’s no one else I’d rather do life with!