Strength and Mini-meltdowns: Tips for life with autoimmunity and loving someone with autoimmunity4/26/2016 I'm standing at the salad bar at Whole Foods, staring down at the prepared foods, losing the battle to hold back my tears. I can feel the heat rising and splotchy tears start to fall. I stare straight down into my empty brown salad box as people walk around me. Just hold it together, I tell myself, desperately trying to think of anything that will distract me from more tears, anything to avoid people noticing that I am crying. But it is too late. A vault inside of me has cracked open and all of the emotion I've been holding on to floods out. My husband has noticed me and walks over to me.
I can barely whisper to him "They don't have my salad today." The one thing I can eat. They don't have it at Whole Foods today. Of course, this all seems very melodramatic. Sure, I could have bought all the ingredients and made my own salad. Sure, it is just a salad. Was I crying because I had planned to get my one "safe" salad and have a relaxing dinner on the Whole Foods patio with my husband and FOR ONCE not have to cook a meal from scratch? Yes. #firstworldproblems. Also, autoimmune disease problems. Fast forward one month later. I'm at lunch with a friend. I've ordered a grassfed burger, no bun and just veggies on top. It arrives with a sauce. I've explained all my allergies to my waiter who then assures me the sauce is totally grain, dairy, corn, and soy free. I take a bite of the burger and immediately taste soy. I want to enjoy my friend's company-- I'm here to spend time with her. And now I am completely distracted by the fact that I have just taken a bite of soy and I can't eat this. I wait for the waiter to return and explain the dilemma to him. He leaves to go to the kitchen to check if there is soy in the sauce. My friend has finished her meal. We wait. The manager finally comes over and apologizes. He offers to remake my food. At this point, we've been there a while. He kindly asks how he can remedy this. I am so embarrassed at the time this has distracted from our meal and at my own high maintenance requests. I burst into tears, further embarrassing myself. Again with the melodrama. Sure, I could have just reordered the meal. One waitress at a restaurant in Austin said it best, in my opinion. I had just told her my food restrictions. And in a completely kind, patient voice she said "Wow. That must be exhausting to have to look out for all those things all the time." And that's just it-- one single incident doesn't set me off crying. When my joints hurt one morning or I go a family function where there is nothing for me to eat, it really isn't a big deal. But add up all of the symptoms that I deal with, all of the unpredictabilities-- will I have energy to work out today AND cook dinner?-- will I have brain fog and get dizzy at work?-- will I need to plan ahead for a social function?-- will my friends pick a restaurant where I need to prepackage all my own food? It is exhausting. I'm already tired from having an autoimmune disorder and helping my body heal. Add the emotional of feeling like a constant hassle, a constant inconvenience, a constant sense of being abnormal, a constant fear of accidentally eating something that would cause my joints to swell and my hearing to fade. It is a daily struggle to remind myself that I am making progress, I am getting better, and I will heal. I have good days and bad days and then some days in which I think I'm doing good only to break down. One blessing is seeing the love of the people around me. My husband who is my eternal optimist and sees almost all of my breakdowns, my friends (especially my fellow AIP'ers) who have encouraged me in my transition, and my family members, especially my grandmother, who have adjusted some of their recipes to make sure I have something to eat at family gatherings. After one year of adjusting to autoimmunity, I've gotten a lot of practice at coping with the difficulties that come with it. Here's some things I've learned for those coping with autoimmune AND those helping people with autoimmune: 1. Looks can be deceiving. I can look totally normal. You may not notice my swollen joints. Or that I am feeling dizzy and disoriented. People with chronic illnesses like autoimmune can look just like they always have and yet, they might be in constant pain. You can't tell just by looking at them if it is a good day or a bad day. Just because someone seems ok, they may not be. This works both ways though-- I've learned that I can't assume people know I'm having an off day. In fact, people wouldn't know I'm sick unless I said something. So I can't get angry or upset with the people around me for not understanding when I haven't communicated how I feel. For me, I've had to accept that communicating my pain or struggle does not mean that I am a weak person. It is a way I can be fair with those in my life who love me and want to help me. 2. Every day is new. Some days, I can do a HIIT workout and blow everyone else in the gym out of the water. I can run 5 miles, do 100 squats, and then not be sore the next day. And then some days, I struggle to walk a mile and need a three hour nap in the afternoon. Some days, my inflammation is under control and I can eat a piece of chocolate. Some days, anything but broth, juice, and veggies is going to cause joint pain. I have to listen to my body and take it one day at a time. For those around me, they've learned they can't assume that just because I was totally healthy one day doesn't mean I'm in permanent remission. But this works both ways-- on rough days I have to remember that I am getting better, but remission is not a locked in cured state. I will always have to work towards healing and remaining healthy. Bad days aren't permanent death sentences and there is always hope for tomorrow. 3. Patience is your new favorite virtue I've been working on healing for almost a year now. I am not better. I've made a lot of improvements, but I'm not healed. I know people who have been on Autoimmune Protocol for several years and continue to heal, but are still dealing with health issues. I didn't get sick overnight and I can't expect my body to heal overnight. It will take years of recovery. Sometimes I think I'm doing so much better and then I have a flare. I want to give up. But then Tom reminds me of how much progress I have made. For people who are helping those with autoimmune, we desperately need your patience. It can be frustrating to be close to someone who is so unpredictable, physically and emotionally. Please remember, we didn't choose this. We need you to be long-suffering with us. Patience is needed to heal; patience is required when trying new treatments, adding new supplements, integrating new foods, and combating infections. I am so thankful that when I get frustrated with my progress or lack thereof, Tom reminds me of all the good things that have happened thus far on our path and that we need to enjoy the now. Real healing is not a quick fix. 4. I am not my disorder. As I said earlier, people with autoimmune disorders would not pick to deal with their ailments. I don't want to be a hassle. I don't want to have to order different foods or cause inconveniences at restaurants. I hate that I cost my husband so much in medical bills. I hate that sometimes I can't physically do all the things I want to accomplish in one day. I hate that I get brain fog or get dizzy sometimes. I hate that sometimes I lose my patience with the people I love the most because I am dealing with fear of the future. I don't want all of these things to become a part of me. In some ways, I feel like these adjustments have replaced so much of my personality and who I am. I can't put my head down and bulldoze my way through my problems based on sheer will power alone, like I want to. I have to take things in stride-- a practice that is completely against my personality. But... in some ways, dealing with autoimmunity has made me a stronger and more compassionate person. I have to fight to remind myself that I am still me, despite of my circumstances. I just hope and give thanks for the people in my life who see me for who I am really am and not what I am going through. So there you have it. I am sure years down the road, I'll have more to add to this list. And while this list might seem simple, these things were not easy lessons to accept-- they were accompanied by a lot of tears and a lot of inner battles, but also, a lot grace and acceptance, both towards myself and from other people in my life.
1 Comment
Annalisa
5/13/2016 11:51:42 am
This is my most favorite post. Totally articulates what we who have chronic illness go through daily. Wonderful job putting into words!
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