Getting an autoimmune disease diagnosis causes your life to change immeasurably. In this article I summarize lessons I’ve learned along the way while living with autoimmune disease.
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I was a deer-in-the-headlights when my doctor confirmed my autoimmune disease. I wasn’t mentally prepared to digest the finality of that diagnosis. There were questions that needed to be asked. How would living with autoimmune disease impact my life? What could I expect? But the words wouldn’t come. All I could do was stare blankly from the crumpled paper of my examination table. In the distance I could hear my doctor talking about medication.
I left her office in a haze. I didn’t know anyone with an autoimmune disease, let alone, a rare autoimmune disease. I was on my own and I had no idea of what to expect. Not just physically, but emotionally. Who could I turn to? Who could relate to what I was going through? Who was going to tell me not to worry, because everything was going to be all right? My friends were just as stumped as I was.
Each twist and turn in the months and years that followed left me feeling unprepared and overwhelmed. Fast forward to today. It’s hard to believe I’ve been living with an autoimmune disease since 2012. I’ve learned a lot about living with autoimmune disease. Here are the lessons about autoimmune disease it took years to learn.
1. Your life will change in ways you can’t imagine
Getting an autoimmune disease diagnosis isn’t like getting a diagnosis of strep throat, where you take medicine for a prescribed amount of time and then, voila! you’re all better. From now on there will be a steady stream of medications and doctor’s appointments, flare-ups and side effects, blood tests and possibly bone density scans (to monitor the affect your medicine is having on your organs and bones, respectively).
Like myself, it may have taken you years to receive a diagnosis, so for a brief moment in time you may feel relief, only to experience denial when the reality of your disease sinks in. You may feel sad, afraid or even cheated, especially if you’ve always strived to live a health-conscious life.
For those of you who have already made a connection between your diet and flare-ups, you may experience a sense of loss as you mourn the foods you can no longer eat. This, along with your symptoms, could impact how you socialize with friends and family. You may be too tired, in too much pain, too self-conscious or too depressed at the lack of food options available to you. Everything you do from this point forward will need to be weighed and assessed against how it will impact your disease and vice versa.
Woman are adaptable beings. We can carry a growing baby in our bellies, make the necessary dietary and lifestyle changes to accommodate our little bundle until the day of their arrival, then rearrange our homes, our routines and our lives for the next eighteen or so years afterwards. We’re resilient. We may get knocked down but not knocked out. We just need to educate ourselves on how to manage our “new” life. For starters, allow yourself time to grieve the loss of your healthier self. Learn as much as you can about your disease and connect with other individuals or organizations who share your condition or can provide information and support. You’re going to get through this.
2. What you eat can have an impact on your flare-ups
When I was diagnosed with my autoimmune disease there wasn’t a lot of information available on the impact of diet. Today, one doesn’t need to look far to find suggested dietary modifications as a means of managing autoimmune disease flare-ups. According to the National Institute of Health, the Western diet, considered high in fats, salt, sugar and refined grains, is known to negatively impact T-cell response, the cells largely responsible for autoimmunity. Other organizations such as the Chrohn’s and Collitis Foundation and and the International Pemphigus & Pemphigoid Foundation suggest avoiding certain trigger foods known to exacerbate flare-ups. Trigger foods vary by disease. Most if not all physicians who practice functional medicine, a branch of medicine that focuses on the patient as a whole in an attempt to address the root cause of disease, agree that foods containing gluten should be avoided.
A common theme in many of the autoimmune support websites is the importance of maintaining a well-balanced diet. Also be mindful of the fact that not all foods will affect everyone the same way which is why subscribing to a specific diet may not work for many people. Pay close attention to how you feel for patterns with disease activity.
3. Taking care of your overall health is important now more than ever
The human body is a lot like a car. We supply it with the fuel it requires and in turn it takes us where we need to go. Imagine what would happen if you neglected to repair a faulty transmission. Sure, your car would still run but it probably wouldn’t be the smoothest ride you ever had. Now add to that faulty spark plugs and poor wheel alignment. You don’t need to be a mechanic to know that your car wouldn’t be running at its best. Each issue would detract from your car’s performance, causing it to compensate in ways that could cause damage to other parts. The same principle holds true for the human body.
Many of us go through life ignoring nagging issues like constipation, heartburn, undiagnosed allergies, etc. because, let’s face it, these issues aren’t exactly showstoppers, are they? But when you’re living with an autoimmune disease you’re already not at your optimum health. You’re dealing with symptoms of your disease which very well may detract from your personal performance. Add to that a laundry list of untreated issues and you’re likely to start a domino effect of declining health.
The important thing to remember is that all of your internal systems were designed to operate like a well-oiled machine. Each system is interconnected, so a breakdown in one system like your digestive system for example, could cause problems with other systems like your excretory system (the system responsible for eliminating wastes). Getting adequate sleep, rest, and nutrition, maintaining a healthy weight, and going to the bathroom regularly will go a long way in helping you feel your best.
4. Your medicine may cause some not-so-common side effects
Chances are, your autoimmune disease arrived with a boat load of symptoms, each one unrelated to the other. If you suffer from other conditions as well…migraines, back pain, or maybe even another autoimmune disease, or if you take multiple medications, it may be challenging to distinguish a “side effect” from a “symptom”. A side effect is an adverse reaction to a medication. A symptom is subjective evidence of a bodily disorder.
Many of us race through our days at warp speed trying to accomplish everything on our to-do lists, only to wake up one day and realize that we’ve been feeling this weird pain in our neck, or numbness in our hands, or —— (add your strange symptom here) for several weeks. If we’re not careful we’ll find ourselves dismissing these seemingly unrelated issues, when in fact, they may be related to our autoimmune disease, the medication prescribed to treat our autoimmune disease or the effect of combining multiple medications together.
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Be sure to read the prescription overview included with your medication to learn of possible side effects. This is not an exhaustive list but it’s a good place to start. You can also speak directly with your pharmacist if you’re uncertain as to whether your medicine is at the root of your new issue. Online patient reviews may also provide information not available elsewhere. It’s worth mentioning that side effects can occur immediately after starting a new medicine or even after being on it for a prolonged period. They can start out gradually and worsen over time or come on suddenly. Keeping a journal can be helpful with noticing trends.
5. There may be medications other than what your physician prescribed that are better suited for your individual circumstances
Doctors care for hundreds of patients, assessing symptoms against the knowledge they’ve attained throughout their training and practice and determining an appropriate course of treatment. While many factors are taken into consideration when prescribing medication such as existing medical conditions and current medications, other external factors can make their way into the decision-making process that have little to do with you or your circumstances.
One study found physicians prescribing practices were partly influenced by pharmaceutical marketing strategies. Cost and the physician’s personal attributes also played a part. But is that the best medicine for you and your individual circumstances? Don’t be intimidated just because your doctor may be an expert in his field. You’re an expert when it comes to knowing what works and doesn’t work for you.
6. When living with autoimmune disease, you need to become your own advocate
As women it’s not uncommon to put others’ needs above our own. For many of us, advocating for ourselves doesn’t come easy. But self-advocacy is crucial when living with autoimmune disease. So you know that minor ache, irritation, bump, bruise, etc. you’ve been experiencing since your initial diagnosis that never really went away with your prescribed medication? Or that new gnawing symptom you recently begun to experience that seems totally unrelated to your autoimmune disease? Don’t suffer in silence. Say something. That new symptom may very well be a side effect of your medication, that stubborn ache, bump, bruise could be an indication that your medicine isn’t the best fit for you. The point is, you won’t know unless you speak up.
When you go to the doctor ask questions, seek clarification and voice all your concerns. Write your thoughts down beforehand so you don’t forget anything. Discuss your concerns with a trusted friend or relative who can help you articulate your needs.
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Living with autoimmune disease can be challenging. This is not how you imagined your life would be. You may have a number of negative feelings associated with your diagnosis. It’s okay. Process those feelings. Mourn your losses. Get your bearings. Then, make a conscious decision that you’re not going to allow this disease to define you. YOU define you. Take charge of your health, as much as is in your power to do so. Educate yourself so you can know what to expect. Connect with others who can relate to what you’re experiencing. Be an active participant in your treatment. And LIVE.