5 Essential Steps to Understanding Chronic Illness – How I Did It & You Can Too
What started as the fulfillment of my dream of becoming a mother ended with a painful and surprising chronic illness diagnosis 7 months later. It was a very scary time dealing with a newborn and a disease I did not understand. It took me 14 years to figure out how to live with Rheumatoid Arthritis. But they were critical on my path to understanding chronic illness and being able to thrive in spite of it.
I’m here to tell you how I finally gained an understanding of chronic illness & my body. Please do not wait 13 years to begin understanding chronic illness like I did. Your chronic illness experience will be different than mine. You cannot rely on medicines or diet alone to alleviate your symptoms. You need to be informed and find what works for YOU. You need to put your health as a priority. You need to find the keys to understanding YOUR chronic illness. Do it now, do not wait for the pain to go away on it’s own. It won’t. It will only get worse.
Note: This post contains affiliate links as indicated by an asterisk. Purchases from these links provides a small commission to me at no extra cost to you. I am also NOT a medical professional, I am just a patient sharing my experiences with RA. PLEASE seek a professional medical opinion if you are in pain or need a diagnosis of symptoms you are experiencing.
What is Wrong with Me?
At 27 years old, my fingers were stiff and swollen like sausages. They hurt so much I cried trying to unbuckle my precious newborn out of his car seat. My knees were swollen, I could hardly move my arms without wincing from shoulder pain. What started as a sore throat when my baby was 6 weeks old, triggered my immune system to attack itself. Little did I know how my life would change.
After 7 months of sleep deprivation from a baby who wanted to nurse around the clock, stress from not knowing what was wrong with me and working a full-time job, I finally had the answer to my pain: Rheumatoid Arthritis (RA). RA is an autoimmune condition where the immune system destroys healthy joints. RA is chronic, incurable and life-changing.
RA symptoms can include (but are not limited to):
- Pain and stiffness usually more prominent in the morning, lasting 30 minutes to a couple hours
- Pain and stiffness is usually symmetrical (ex, in both shoulders, both hands, both feet)
- Swelling, redness or joints hot to the touch are signs of active inflammation
- Low grade fevers
Related Post: My Journey with Autoimmune Rheumatoid Arthritis
Where Do We Go From Here?
5 Essential Steps to Understanding Your Chronic Illness
There are things I wish I had done when I first received my diagnosis 14 years ago. Being a new mom and working full-time, I did not make time to understanding my chronic illness or what this new life-changing diagnosis meant. I did not make my health a priority and now I am paying the price for damage already done.
Here are the 5 critical steps I learned to understanding chronic illness in the past year. If you are suffering from an autoimmune or chronic illness, I hope these will help you in some way too.
1. Read About It
There is a ton of information on the Internet and in books. How do you weed through the information overload?
My first step to understanding chronic illness was to read the The Autoimmune Solution: Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases* by Dr. Jan Myers. As an autoimmune illness patient herself, Dr. Myers captures well the fears and questions we deal with on a daily basis. It was refreshing to hear a physician who could empathize with the unique situation that chronic illness patients face. When’s the last time your physician really understood what you’re going through?
Still I was a complete skeptic that her “solution” would help me. Dr. Myers’ logical, scientific explanations opened my eyes to just how many conditions I have (RA, allergies, asthma, acne, dandruff, swollen gums) that all are part of my immune system’s wacky response to illness, food and environmental triggers.
Honestly, her “solution” about everything patients should eliminate from our diet and environment is overwhelming to process at once. Read the book slowly. Process each vital piece of information at a time and see how you can incorporate it into your life. The Autoimmune Solution* is worth the read if you want to understand how your body responds to triggers that cause your chronic illness symptoms and you are willing to try to prevent or alleviate the pain.
Related Books:
The Immune System Recovery Plan: A Doctor’s 4-step Program to Treat Autoimmune Disease* by Dr. Susan Blum and Michele Bender
Your Life with Rheumatoid Arthritis: Tools for Managing Treatments, Side Effects and Pain* by Lene Andersen (40+ year RA patient)
Conquer Your Pain in 9 Steps* by Carole Staveley
[bctt tweet=”Step 1 to Understanding #ChronicIllness: Read All About It with these helpful books #spoonies” username=”momsvictories”]
2. Try an Elimination Diet
The Autoimmune Solution* recommends eliminating all dietary triggers at once for a period of time to reboot your immune system. I was so overwhelmed, I cried. I’m a foodie, growing up with a mother who is a fabulous cook, I have always turned to food for comfort. How on earth was I supposed to give up all the food I loved cold turkey and cook something my underweight growing boys will eat?
After failing a half-hearted attempt at a gluten-free diet once before, my second step to understanding chronic illness was to give an elimination diet my full effort. No more excuses. I needed to better understand how food really impacted my body. Thankfully, Dr. Myers gives a menu plan with breakfast, lunch, dinner and dessert ideas incorporating the recipes she includes in the book. I tried the Slow Cooker Chicken, the Bone Broth and some brussel sprouts recipe that my boys actually loved! Go figure!
Soon after, I spoke with a nutritionist about how impossibly overwhelming the elimination diet sounded, she recommended that I take it slow. Give up each of the following food groups for 2 months to see how it impacted my pain and stiffness. Then reintroduce that food group and eliminate the next. She warned me that the diet may not take away all the pain or allow me to be off meds entirely but it could alleviate some of my daily pain and lessen painful flares. Less pain? It is worth a try!
- Refined sugar (honey and maple syrup ok in small doses)
- All Dairy
- Gluten
- Corn & Soy
- Citrus
- Nightshade vegetables (peppers, eggplant, potatoes, tomato)
- Limit meat to 1 meal a day
I focused on eliminating the first 3 food groups and restricting my meat intake from the beginning. The diet improved my regular morning pain by 90% in 2 weeks. The diet also surprisingly left my body unable to predict impending rain and curbed my PMS symptoms as well. In fact, the diet helped me so much, I was able to hike to the bottom of this stunning waterfall and 2 others with my Superhubby for our anniversary one month after starting the diet. I did not think I could do it but I did!
Related Cookbooks:
Against All Grain: Meals Made Simple: Gluten-Free, Dairy-Free and Paleo Recipes to Make Anytime* by Danielle Walker
The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body* by Sarah Ballantyne
[bctt tweet=”Step 2 to Understanding #ChronicIllness: Try an Elimination Diet and see if it works for you #spoonies” username=”momsvictories”]
3. Track Your Wellness
In my first 13 years with RA, I only kept mental track of my pain and what happened leading up to the flare. However, after reading Dr. Myers book and speaking with the nutritionist, my third step in understanding chronic illness was to better document the factors that I theorized impacted my body. It was hard to tell which factor was causing me to flare at any given time.
So on the way to hike that waterfall, my Superhubby bought me an anniversary gift of a FitBit Charge HR* to track my steps. I thought he was nuts. I knew I could not consistently achieve a “normal person’s” 10,000 steps a day with the damage done to my feet. But he wanted me to figure out how many steps I can take before my “spoons” (energy) ran out or my feet would start burning in pain. Simple but genius, right?
I started to track in my planner meds I took, the weather/morning pain scale/my mood (indicated by pink “W”), # of steps (dumbbell icon), anything I ate during the day (“B”, “L”, “D” at the bottom, and my weight. I also wrote down any other immune response symptoms like acne, asthma and allergies that were flaring. It really helped me figure out what foods triggered my pain and other symptoms.
I completely felt like a science experiment. However, from my journaling, I’ve come to learn theses triggers of my RA pain and other important notes:
- Stress (impact is immediate)
- Rain (pain starts day before rain rolls in and ends when rain is on it’s way out of area)
- 2 days before my monthly cycle starts
- Dairy (flares my pain day after, asthma and allergies a couple hours after)
- Gluten (flares my pain day after)
- More than 5g of sugar in a day (flares my pain day after)
- On an average day, 5,000 steps is my “spoon” limit before my feet start hurting
- Sticking to diet and 15 minute walk on sunny days can increase my # of steps before pain and improve my mood
I’m still tracking my food and it’s impact on my body. I have my “cheat” days on my diet but I know that cheating will come at a physical price. These days, every time I put food in my mouth, I consider whether the cost (pain) outweighs the benefit (deliciousness!).
Do you keep a food, pain or wellness journal? What have you learned about your illness? If you need help tracking your food intake and how it impacts your symptoms, grab my free Food and Symptom printable here.
Related Wellness Journal Tracking:
Wellness Bullet Journal Daily Entry and Med Tracker
[bctt tweet=”Step 3 to Understanding #ChronicIllness: Track Your Wellness with a #planner or #bujo #spoonies” username=”momsvictories”]
4. Find a Support System
My family is incredibly supportive. They rally around me on my bad RA days without complaint. But I can read it on their faces. Unspoken fear. Immense worry of what the future will hold. “It’s not fair,” my husband will say. “I wish I could cure RA for you,” my kids will say. The offers of help from my in-laws. The sadness but strength in my parents’ eyes when I tell them about my bad days. The worry in my mother’s voice every time she asks the loaded question “how are you feeling?”
Every bad RA day brings the reality of RA to the forefront. I cannot say I am not worried too but it breaks my heart more to see the people I love in emotional pain because of my physical pain. In some ways, I internalize a lot of what I’m going through and I do not discuss with them my deepest fears. But I need an outlet, I need hope and I need someone who understands.
Besides my best girl friends and our book club, my fourth step to understanding chronic illness was to seek out online support. These resources help me with the mental aspects of RA and it is helpful to discuss symptoms, medications, compare doctor’s advice and just be there to discuss our fears.
- Becomin Neurotic
- The Mighty
- Rheumatoid Arthritis Guy
- RA Warrior
- Rheumatoid Arthritis Support Group on Facebook (private group so your posts do not appear on timeline)
- Rheumatoid Arthritis Managed Naturally Group on Facebook (private group so your posts do not appear on timeline)
What resources do you turn to for support from RA or your chronic illness? I do hope that my blog, Mom’s Small Victories, will become a source of support and hope for you too.
[bctt tweet=”Step 4 to Understanding #ChronicIllness: Find a Support System that understands your fears #spoonies” username=”momsvictories”]
5. Find Your Happy Place
A flare can drain me both physically and emotionally. When I am in pain, I want to cheat on my diet and turn to ways to self-soothe and get my mind off the pain. My fifth step to understanding chronic illness is to find my happy place. Here’s what works for me to get me to my happy place while I endure the flare:
- Snuggle under an electric blanket*
- Wear my husband’s sweatshirts
- Listen to my kids’ heartbeats
- Read on my Kindle Paperwhite*
- Color in my Lost Ocean coloring book*
- Watch a funny movie
- Journal or draft something non-RA related for my blog
- Listen to music
What do you do to endure the pain and symptoms from chronic illness?
Related Post:
Gift Guide for Rheumatoid Arthritis Patients for more ideas to help cope with RA
What Powers Your Happy? + 3 Ways to Find YOUR Passion in Life (Besides Your Family)
[bctt tweet=”Step 5 to Understanding #ChronicIllness: Find your Happy Place & tools to cope #spoonies” username=”momsvictories”]
That in a nutshell is how I’ve dealt with RA for the last 14 years but I have really made progress this last year in understanding my chronic illness. Because every patient is different, I truly believe it is important to take steps to understand your body to achieve the most positive outcome you can from life with autoimmune or chronic illnesses. I hope some of my tips will help you on your journey. The battle with chronic illness is a marathon, not a sprint but together we can help each other as I say on my blog, “Celebrate Life. Thrive with Chronic Illness.”
True story. There once was a 42 year old blogger whose mother was diagnosed with RA at 42, whose daughter was symptomatic for two years before being diagnosed at 3, and *still* is completely disgusted that she has not been diagnosed due to “negative” blood test results.
I have extensive experience dealing with RA and it has not prepared me for this. Thank God my daughter is in remission because I can function right now.
I’ve been tracking my symptoms for a while but not as closely as you have. Thanks for the tips. – Herchel
Oh goodness, I’m so sorry to hear you’ve got RA too but so glad your daughter is in remission. I hope that my tips help. Let me know if there’s any specific questions you have that I can help you with and I’ll be glad to let you know my honest experience. I hope they can get your symptoms under control quickly!
I like the elimination diet and tracking. My hubby has a lot goiing on right now and I feel like this would be a good way for him to see what types of food he should/shouldn’t be eating.
It’s so good for those of us who are blessed with good health to read about the struggles of those who deal every single day with chronic illness and pain. Thank you for opening eyes and hearts to the struggle.
Thank you for the encouragement Michele, it is what I call the silver lining of my disease. That I can appreciate the smaller things and also open people’s eyes to what they can’t necessarily see. It’s an important lesson for us all that we never know what invisible battle others are facing. We can’t judge based on appearances.Your recognition of others’ struggles and how it opened your eyes means as much to me as helping someone in pain.
This is wonderful! I have FND(functional Neurological Disorder) and my condition is extremely stress-responsive but unaffected by food(Thank goodness!!) – my partner now has been diagnosed with pernicious anemia and has osteoporosis(we are too young to be dealing with this!!), so I am now anticipating a bit of a learning curve on food related and food-responsive conditions. Your suggestions ring very true as a spoonie with a chronic illness, and has inspired me on some additional paths to help my partner cope with his chronic pain and newly-discovered health issues!
I’m so glad this helped you think about your conditions in different ways. I’m sorry you and your partner are having to endure these at a young age. I was 27 when diagnosed and a brand new mom and it was a life changing experience. Best wishes, if there is anything I can help with especially with your diet issues and struggles, let me know, I hope you both find relief.
Hi Tanya, Such an interesting post! My RA is a mere pinprick compared to what you go through, but I would love to be medication-free. Taking all that poison for another 30 or 40 years can’t be good! So, my question is, does your regime (diet, exercise, etc.) mean you can reduce the medication you take, or is it only that the pain is less?
I have been experimenting and don’t use dairy as a rule (with exceptions!) and overall, the RA is a lot better than it was. And now I’m seeing whether coffee (not taking it) might help. I used to have a painful foot (especially in the morning), but when I was on holiday recently, and drank very little coffee (and walked a lot), I hardly had any trouble with it. I don’t really want to go back to drinking coffee now to see if it really is a culprit, but I probably should! Just to make sure.
I would love to be medication free as well but honestly I’m terrified of it. I remember how bad the pain was, how I felt like an inadequate mom for not being able to walk or do the simple things my baby needed. I can’t go back to that especially now with 3 active boys so I still take meds though less of it. I don’t take my sustenance RA med like I am supposed to and I also hardly ever take my allergy or asthma meds as long as I stick to my diet.
I did go med free a few times when pregnant and then when I tried to go back on the medicines 6 weeks after babies were born and pain was flaring, developed allergies to the med I was taking pre-pregnancy. Now that I’m allergic to two of the meds strong enough to handle my RA (including the Remicade I currently take), my choices will be more limited if I go completely med-free and then later need to get back on. If my RA was not moderate to severe, I might experiment with going completely med free but I don’t feel like that’s a gamble I’m willing to take, not at least till my youngest is in college and independent. 🙂
Dairy seems to be my biggest trigger as well. Yes, I think the only way you can see if coffee is a culprit, is to reintroduce it and see if pain comes back. It may not take long to notice the impact, I have allergy attacks within hours of eating dairy so clearly it’s a trigger for me. I hear some people can’t take caffeine with autoimmune diseases and fibromyalgia. Let me know how your coffee trial goes. If your pain isn’t too bad, I’ll be interested to see if going med-free and managing your RA holistically works for you. I hear it works for some and wish it did for me. Best of luck figuring out what works for you, thanks for sharing and discussing with me.
Thanks for your wonderful reply, Tanya. No, I didn’t expect it would be possible for you to be medication-free, but I think it’s great and encouraging news that you have been able to reduce the amount of medication you take. That is quite a good thing already.
Since my RA is rather mild, I do want to try to go without medication. I’m really not sure I need it. I just wonder if, by not taking it, something will build up in my body and then come out at a later point in time as a bad bout of RA. I think that’s what happened to you, isn’t it?
I’ll let you know about the coffee experiment! 🙂
Sharing with a couple of friends in similar situations, thanks for this #SmallVictoriesSundaylinkup
Thank you for sharing Claire and joining us at Small Victories Sunday Linkup!
There are quite a few things I wish I would have known, too. These are the same five steps I would give for fibromyalgia, too. Especially the elimination diet and forming a support system. Those are two of the biggest steps that have helped with healing.
Thanks Brandi, it is so important figuring out what works for your body. One thing I’ve learned is how differently our bodies react to the disease. Thanks for commenting.
Thank you for sharing these substantive tips. Passing them along to spread this helpful info.
Excellent and practical post. I hope this creates awareness for those having people in their circle living with chronic illness .
Thank you Mom Mandy. Do you have a chronic illness or know someone with one?
Your blog is definitely another great place to stop in for support and cheer! And good information too, from you and your guest bloggers. Hope you have a nice family day today!
After many years of dealing with RA myself, I still found so much useful information and encouragement here. I appreciated too that you mention the times where fear surfaces. Today for example, I woke up with worse pain in my hip ( even though it is a total replacement). I’m thinking, is it: because I strained muscles going upstairs last week, because I had a cold this week, because I skipped meds to aid getting over the cold, because I slept in the wrong position, or because it’s signaling some infection or emergency? This is my fearful thought process! Maybe time to call in support system 🙂
I should add that I am feeling better after breakfast, taking my autoimmune meds, and sitting for my time of prayer and meditation. This last one has been a tremendous help to me and enriches my life in general! I loved reading all the specific features of your “happy place”, Tanya! Thanks for sharing them and may they continue to bring out your wonderful smile!