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How a Social Worker Manages Her Autoimmune Disorder Diagnosis

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As we are nearing the end of the year, many of us reflect on what has happened in our lives during the past year. For me personally this week, I am reflecting on the fourth anniversary of getting an autoimmune disorder diagnosis that has changed my life. It was a long sought-after answer that explained the severe brain fog and fatigue that had plagued me for over five years.

Some of you reading this may also have gotten a chronic illness diagnosis this year and are struggling to comprehend what this means for your present and future, how this impacts yourself, your family and your work, and most important of all, what you can do to mitigate the damage to your body and live as long and productively as you can with fewer symptoms.

Within days of receiving my diagnosis, Hashimoto’s Disease, I began researching it because I was unfamiliar with the condition. I quickly discovered that there really is no cure, as with many autoimmune disorders. Prescription medication can help some of the symptoms but the most relief would come from an overhaul of my diet.

Due to the shock of the diagnosis, I took a couple weeks to continue reading, learning and absorbing the information amid my severe brain fog and fatigue. I knew I needed to make changes, but it would have to be in baby steps. I enjoyed the holidays with my family keeping all our traditions, including favorite foods, because I knew it would be my last chance to have those things exactly the same for me. This is when I began grieving my diagnosis.

The following month I began the long journey of eliminating inflammatory foods from my diet, mainly gluten, dairy, refined sugar and caffeine. Throughout that first two months I saw some minor improvement, so I kept going. I knew that it took decades to become sick so it would take more than a few months to feel better. After four months, the inflammation weight began falling off. My goal was to feel better, not necessarily to lose weight, so I was shocked that in less than two years I lost 45 pounds.

What I also lost was much of the brain fog and fatigue. It’s still a journey that I walk daily, one meal or snack at a time. I have found substitutions for the foods that I used to really enjoy, discovered new foods that I love and have created many coping skills for avoiding temptation to eat foods that are harmful to my body. I have also learned about factors that contributed to worsening my chronic illness and were critical to addressing in order to heal myself. If you are struggling with a diagnosis, here are a few tips that have helped me:

  • Set long-term and short-term goals
    Before I was diagnosed, I was living my life day to day as a routine, not really thinking much about what my goals were. This led to daily decisions focused on the present and didn’t factor in what I wanted my future to be. I was fairly healthy and assumed that I would be fine. I was mistaken. I learned early on that to stay focused and motivated I had to create a deeply desired goal for my future self.
  • Mood follows food
    One of the biggest lessons I learned was that inflammation happens in the brain just like it happens elsewhere in the body. Inflammation in the brain presents itself as brain fog, fatigue, anxiety, depression, sleep problems and difficulty with concentration and memory.

    Inflammatory food can cause creates problems in our brain, just like it does in other parts of our body. It can take up to three days to experience the effects of poor dietary choices. The big cinnamon roll with icing may taste great to you now, but you likely aren’t thinking about it as a cause three days later when you are exhausted and can’t concentrate at work. The food that you eat really does influence how you feel physically and mentally. Have a backup plan When I decided to change my diet, I realized quickly that I needed to have a backup plan for times when I would be hungry and didn’t have fresh food readily available. There are lots of times in our busy lives when we get hungry and if we don’t have a healthy snack right then, we turn to fast food or other unhealthy choices. I keep individually packaged snacks like nuts, fruit bars or packaged olives at work, in my car and in my purse so that I am never without some type of healthy option.
  • Allow yourself to grieve Any diagnosis of a chronic illness will involve some level of grief. It’s difficult to accept that so many parts of your life change due to your health. I still grieve some of the foods that I miss and even reject those foods while I am dreaming in my sleep. It was also sad for me thinking about how much I missed out on with my family and friends, and how my work was affected because of an invisible illness that I couldn’t put a name to. I grieved the years that it took to find a diagnosis. I felt helpless for a long time and I hear that same grief from other patients that I see. Acknowledging it and talking about it is vital. Unresolved grief from previous losses also has a negative effect on health, so if you are still struggling with a loss, seek grief counseling so that this is not a roadblock to healing.
  • Rest!
    We all live in a busy world and balancing family, pets, housework, careers, bills, traffic, sports, hobbies, volunteering, etc., is exhausting. Even with the best time management skills, it can feel impossible to get everything done. One thing that we forget is that resting is an activity that is just as necessary as eating. We literally cannot do anything else in our life if we do not get adequate rest. I had to learn how to listen to my body and allow myself time to rest. Resting is not laziness; resting is just as worthy and necessary as diet management in healing. Rest is sleep, but it can also be laying down to watching television or read a book.
  • Make time for quiet time
    This is a secret weapon in healing that is underutilized by most people, and I am still working on incorporating more of this in my own routine. Quieting the mind and spending even five minutes a day doing intentional meditation, prayer or thoughts of gratitude can create major shifts in our perspective, motivation and overall attitude. There are many free online sources for guided meditation which are very helpful for those who have difficulty quieting the mind on their own. There are also guided sleep meditations for those who need help quieting the mind in order to get to sleep.
  • Find the right kinds of exercise for your body and abilities
    This was challenging for me particularly due to the fatigue that I felt for so long. When I began feeling better, I focused on doing low-impact exercise that interested me since high impact exercise tended to overwhelm my body and deplete all my energy for days afterward. Gardening is ideal for me because it is low impact, but it is active, creative, grounding and enhances the visual appeal of my yard so I feel accomplished. It can also be divided into smaller jobs so that I can do as much or as little as I feel up to. Identifying the type of exercise that your body can handle and pacing yourself when you do feel good so that you don’t overdo it are both important.
  • Look into support groups
    I previously hadn’t had many in-depth conversations about autoimmune disorders and knew few people who were struggling with this in my personal life. So, when I was diagnosed, I turned to social media support groups to get advice, understanding and information about coping with this condition from people who were also going through the same thing. This was so valuable to me in my journey. Knowing others who had taken control of their health and felt better, inspired and encouraged me to believe that there was hope. If they could heal, then it was possible for me too. There are in person and virtual support groups for many types of medical conditions as well as groups on social media platforms.
  • Be consistent with your medical care
    After I was diagnosed, I realized that my health care costs, medication and visits would be increasing. I now have extensive bloodwork every six months to make sure that hormone, metabolic, cardiac and immune system levels are optimal. Finding a trusted physician who is a great listener and consistent provider was a game changer for me. Letting her know what is and isn’t working for me and being heard is invaluable. Being in partnership with my doctor to improve my health is critical. She is only able to help me as much as I participate in my own care and inform her. Taking medication and supplements daily, following my diet, exercising, resting and going to regular appointments are my job. I only have control over those things. Remaining informed and educated on autoimmune disorder research and treatment as well as providing patients with guidance and treatment is the doctor’s job. There are many qualified professionals out there to treat chronic illness and sometimes it just takes some effort to find a provider who you feel best meets your needs.

Chronic illness and autoimmune disorders are life changing but there are aspects of these diagnoses that can be controlled and minimized. Give yourself the best and longest lasting gift this season. Decide what your long-term goal is and make a commitment to yourself to get there. When you make a mistake or falter, forgive yourself, learn from it and get back on track. You and your future are worth it!

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