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As I’m writing this, I’m sitting on the couch trying to make it through the day without yet another nap as I walk through a flare-up of my autoimmune disease. I was officially diagnosed with my first autoimmune disease in 2012, and have received multiple diagnoses since then. All of these discoveries have led into an intense look back at my entire health history, and all the warning signs along the way, and years of walking through the autoimmune spectrum without a diagnosis. This has been part of my life for a long time now, and it has been full of so many ups and downs, which is pretty much how chronic illness works. It is a string of ups and downs and trying to live your life in such a way that you are thriving and at your best, while also taking the best care of yourself that you can. It can be hard enough to find that middle ground where you thrive, let alone navigate the social upheaval that can come from a diagnosis as you walk through massive lifestyle changes.

After that first diagnosis, I began changing everything about my life. I found out I had Celiac Disease (which I had been suspecting for a long time but had to convince my doctor to actually test me for) about a week before Thanksgiving in 2012. I flew home to spend the holiday with my family, and broke down in tears at the grocery store as I tried to figure out what I could eat. Being gluten-free wasn’t a world that I had ever been exposed to before, and I honestly didn’t know just how much gluten is in everything. My dad was at the store with me and had no idea what to do or how to help, and there have been so many similar moments like that I have now waded through as I’ve continued to make lifestyle changes and walk through more diagnoses.

Since 2012, I have made so many changes. I started by going gluten free and dairy free, and then adopted a full Paleo lifestyle. I started researching what was in all my household cleaners and makeup products, and was appalled at the chemicals in them and how they were impacting my poor, suppressed immune system for the worse (and lots of them had gluten in them too!). I eventually went fully on the Autoimmune Protocol (AIP) for a year before making introductions (which has led to this current flare of symptoms), threw out all the chemically laden products in my home and now life a toxin-free life. Everything about how I eat and sleep and workout and function on a daily life has changed. It has been hard enough for me to navigate, let alone all my loved ones walking this journey with me. Recently I moved across the country and am making lots of new friends and feel like I am in that tough spot again of trying to help them understand the ups and downs that come with being a friend to someone with chronic illness.

This is by no means an exhaustive list, but here are some things to help you socially navigate autoimmune disease. Autoimmune diseases are on the rise. More people than ever are living with chronic illness. Chances are you know someone walking this road whether you know it or not. A lot of these stem from my own personal experience, as well as the many friends that I have met over the last five years since I was first diagnosed who are also walking this autoimmune road.

Please don’t tell me that you thought that I was better when I express that I am not feeling well.

This one hurts, I’m not going to lie. Chronic illness is just that–chronic. Those of us walking this road have received a diagnosis that we will have to navigate for the rest of our lives. Hopefully we can find the best way to support our bodies so that we can live our best lives possible and keep our symptoms at bay, but often figuring that out comes with a lot of trial and error. It is inevitable that we will experience ups and downs with our health over time.

To be frank, I will never be better, because my autoimmune diseases will never go away. I am doing everything possible to heal my body naturally and get to the root of my symptoms and put them into remission, but that diagnosis, although it doesn’t define me, is always there. Sometimes it takes just one small thing for a massive flare-up of symptoms to occur, and it can take weeks to recover from it (if not longer). Chronic illness is a beast and there are so many variables. We want to live our best lives possible, but it is an up and down road. Please don’t minimize this road that we are walking. This is with us for the rest of our lives.

I hope that we can all live our healthiest, best lives possible even as we live out our chronic illness stories. But the good times also come with hard times. Setbacks in our health journey can be truly miserable (that’s how I feel about this one I’m having right now). Please support us as we are working through the hardships of our health journeys to get back to that place and back on the track of thriving with autoimmune disease.

Please don’t tell me that being more active would help.

This has been a hard one for me! I have a family that is very active and although they may not notice, working out is the topic of many of their conversations, which is great! I am glad that they enjoy it and find a lot of release through it. But I also can’t tell you how many times I have been told that getting up and going for a run or being more active would make me feel better. Especially when I am having a flare-up of symptoms, it would only make things so much worse. Flare-ups can occur because of physical activity.

Working out is a tough road for those of us with chronic illness to navigate. It takes a lot of trial and error to figure out what works for us when it comes to physical activity, and that is so different from person to person. Some people, when their symptoms are in remission and are at their healthiest, can handle high intensity workouts. Others may never be able to do more than go for a short walk (I love walks!).

There was a time when even going for a 15 minute walk would necessitate I take an hour nap afterward. Physical activity is hard for us with autoimmune diseases. It is so easy to take things too far and make our symptoms worse. My fingers hurt just typing this out because when I have a flare-up of symptoms, my mild RA, which is usually in remission, becomes so much worse and everything hurts. I would love nothing more than to be able to workout like my family does, to get a good sweat on regularly. I envy those who can do this. Most of us with autoimmune disease may only ever tolerate low impact exercise for short amounts of time at our best. I cringe inwardly inside every time I am told that what would help me would be being more active. If you only knew how much I would love to be able to be more active!

Please don’t offer medical suggestions.

I definitely cannot speak for all of those with autoimmune disease. We are all in different ways trying to live our best lives with our diagnoses, and I know people on all sides of the spectrum–those who are trying to naturally heal their bodies to those who are taking all sorts of medications to mask the symptoms and are then walking through even more symptoms caused by medications. At the end of the day, we each have to choose the road that is best for us and that we can live with.

That being said, myself and the majority of people that I know who are walking this autoimmune road are trying to heal their bodies in the most natural way possible. We are being extremely conscientious of all that we put in our bodies and on our bodies and are committed to getting to the root of our symptoms, rather than suppress them with medication. Many of us have made massive lifestyle changes to support our bodies, and simply saying there is a pill we can take to make it all go away is not helpful.

I’m not saying there is not a time and a place for medication–I’m currently on two prescription medications to support my body, and am grateful to have that avenue in my life to help me when I need it. That being said, I am also slowly weaning off of the both of those as my body recovers and I am able to support myself in more natural ways. We are committed to our wellness, so please support us on our journeys.

Please don’t tell me how terrible your life would be if you couldn’t eat (insert whatever food).

This one comes with eye-rolls on my part. I am currently in the elimination phase once again of the Autoimmune Protocol, which means in addition to always being gluten-free, dairy-free, soy-free, legume-free, and grain-free, I have also eliminated all nuts and seeds from my diet, as well as nightshades. I know a thing or two about taking things out of my diet. I know which foods I can eat on the regular, and which ones I can only tolerate in very small amounts. I’m still figuring this out! You telling me that you couldn’t possibly live without bread or pasta or whatever-may-have-you isn’t exactly helpful. If you’ve ever been curled up in bed in intense pain, afraid to even move because you feel so sick and hurt so bad, and taking something out of your diet could make that all go away, you would change your tune pretty quick. The wellness that comes from not eating certain foods is worth the sacrifice. You pointing it out and asking me if I feel so bad when you eat a donut in front of me just points out that 1. I can’t have said donut, and 2. You know nothing about the journey that I have been on and why no donuts are worth it. When I realized the amount of relief and wellness that came with not eating certain foods, it felt more like a victory than anything else.

With that being said, please enjoy your donuts to the fullest and don’t be afraid to eat in front of me in fear that you will make me feel bad. I can take it. I’ll just sit next to you and eat my homemade kale chips, which I genuinely enjoy.

Please don’t call me a flake.

Truth time: I already feel like a flake a lot of the time. I’ve had to cancel things last minute far too many times because I wasn’t feeling well or I needed time to rest or because I had to meal prep or it fell at an awkward time and I didn’t have food with me I could eat. I don’t try to do these things–it’s just the up and down nature of chronic illness. I can’t always predict how I will feel all the time. Often I still persevere for the sake of social time, and pay the price for it later. But I am also trying to get better at having boundaries as well so that I don’t have to pay the price because I’m taking care of myself.

Navigating relationships and friendships with autoimmune disease is tough, because generally many don’t understand the up and down nature of it and all that goes into food prep and diet and the lifestyle that we are living to support our bodies. And we can’t expect people to automatically understand it. When I was first diagnosed, I felt like I couldn’t do anything or go anywhere and would never be able to eat out again. Thankfully, that wasn’t true, but still, social situations do require more planning on my part than they may for someone else. And I’ve been through enough flares at this point to be able to tell you that if I am not feeling well, I will cancel whatever I had planned and put my health first.

This is part of what is causing my current flare-up of symptoms right now. I’ve been trying to say yes to as many things as I can as I adjust to life in a new community and part of the country because of course I want friends. But too many late nights and too much pushing myself to do things when I was already exhausted and too many times where I haven’t been able to eat full meals cause I have been on the run has caught up to me. It might sound strict, but for where I am at right now, I have this new boundary I’ve had to put in place that I have to be home by 8:30 (yes, also on weekends) so I can keep my nighttime routine consistent. Sleep is so important to the overall health of all of those who have autoimmune disease, and I’ve disrupted my sleep cycles far too many times recently.

I also just want to mention that a lot of the time, we may look fine on the outside when inside we are dealing with a whole host of symptoms and pain. I fully understand that it can be confusing, especially when we have days where we are feeling great and doing all the things because we want to embrace our lives, and then all of a sudden it appears that we cannot get out of bed. Some people have a chronic illness that exists on the outside, but for many of us our issues are internal, and just because we may look okay doesn’t mean that we feel okay.

Overall, please give us grace when we cancel last minute. I promise the turmoil and guilt we feel about doing it is already eating us up inside, but we also have to put our health first and do what we can to prevent a full-out flare-up of our symptoms. Sometimes we require a little extra patience, and also have to have some extra boundaries in place, so that we can take care of our health.

Please don’t give up on me.

Walking this autoimmune road can feel extremely lonely at times. Especially when it is so new and we don’t have a community of people in our lives that understand it, we feel lost and forgotten and extremely misunderstood. I still feel this way at times! But I am also extremely grateful for my friends and family who have been walking this road along with me and who have taken it upon themselves to learn more about autoimmune disease so that they can better understand me and this road that I am walking.

We need you. We need your love and support and your patience. We need people who are there for us in the hard times and not just the good ones. It can be overwhelming enough for us to navigate this chronic illness road, and having people in our corner standing right there alongside us makes all the difference in the world!

I hope that you have found this helpful, especially if you are dealing with autoimmune disease or you know someone else who is. I love connecting with people who are walking through this journey, and am grateful for all the friends that have come through it! Please feel free to reach out if you have any questions or if you want to talk more about embracing a chemical-free lifestyle (whether you have a chronic illness or not!). I would love to chat more! You can send me a message here!

Standing in the thick of it with you, sweet friend!

 

  1. Sarah

    June 1st, 2017 at 12:09 pm

    Exactly! Reading this felt as though I was talking to myself about my autoimmune diseases (Sjorgen’s, Mixed Tissue Connective Disorder, and more) and the unsolicited advise I find myself receiving. It is a constant monitoring of when able what 15-30 minutes of activity I will choose to engage knowing the price I will pay soon after. It has been 5 years now and as you expressed I do not constantly express verbally how sick I feel or I afraid I am at times. I just want to thank you for your words … words I can relate too as I don’t find this happens much anymore.

  2. S. Good

    September 19th, 2017 at 11:37 am

    I understand what you are saying . I was diagnosed with RA 36 years ago. At first, it was ‘t so terrible but now it flares up too often. People look at me like I’m crazy because they think I’m fine. People have told me that I should walk more and I do as much as my body will allow but that’s not enough according to some people. Others say that I do not try hard enough, but I know my body’s limitations so i do accordingly. I have a wonderful Doctor and he is pleased with the progress I’ve made over the years. I have had two knee replacements and one hip replaced! I thank God I can still walk!

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