Memoir of a Autoimmune Fighter | autoimmuneresilience.org

Memoir of my life as an Autoimmune Fighter

Living with Autoimmune Disease: A Fighter's Truth

They say writing is healing for the mind, body, and soul. Today, I challenge this statement by saying that true healing for me would include unbiased support and complete understanding of what it means to be an autoimmune disease fighter. While I know this may be an unrealistic expectation, unless you are fighting this disease yourself, truly understanding how autoimmune fighters suffer is beyond imagination for those unaffected. What we experience physically, mentally, and emotionally on a daily basis is a reality few can comprehend.

My Awkwardness

Forgive me if I step heavily on your toes or bump into you several times in a crowd. I am not doing it on purpose. My equilibrium is something you and I no longer share. I have lost control over my muscle weakness. Walking behind me on the stairs may require your patience. If you only knew, days like this require me to take life and stairs one step at a time.

My Depression

I often wonder how many people actually suffer from autoimmune diseases and the many overlapping illnesses that plague us so severely. You can describe it or associate any fitting word you like with the term "autoimmune disease". Here are a few that summarize what I feel continuously: chronic, severe, unrelenting, unyielding pain. Is it any wonder why this would not cause depression? The result is the multiple overlapping symptoms of autoimmune illness. There are days I feel like giving up. I desperately try to find ways to keep myself above the shoreline and not fall below and drown. Yes, the days when I would rather stay in bed, in the house, or simply wither away are plentiful. However, you can make a difference with your genuine concern, compassionate understanding, and your willingness not only to care by reaching out, but to sincerely help. Believe it or not, these small acts of kindness can help pull me back from the brink of indescribable frustration, pain, and anguish. Yet spiteful remarks and destructive words can tip me over the edge. Please do not be surprised when you receive a fiery response. Unfortunately, chronic pain, fatigue, frustration, and overlapping illnesses do not allow me to turn the other cheek.

My Fatigue

I am not just tired. I am often in a relentless state of exhaustion. I desire to participate in physical activities, but sometimes I cannot. Please do not take this personally. To your surprise, you may see me shopping at the mall today, but tomorrow I may not be able to help you with yard work, shovel snow, or even think clearly. It is not because I am lazy or do not want to help. I am likely paying the price for overextending my muscles, ligaments, or joints. It does not take much for me to overexert myself, and it definitely is not done on purpose.

My Forgetfulness

Brain fog, or short-term memory loss, is what it is called, and this is what many autoimmune fighters suffer from. Although I may not remember your name, I do remember your face. Even though we had a discussion just minutes ago, please do not get offended or think I am joking. I may not remember what you said or any important details. This is why I carry journals with me, desperately trying to capture important and intimate details of conversations or situations. I am not trying to forget what just happened. I carry my notes, my inserts, my writing to help me remember what I need to.

My journal is a safe keeper of these precious conversations that help fill the empty pages of my brain. Please do not insult my age. This is simply not a factor. Regardless of anyone's age, brain fog attacks all genders and ages and can be linked to sleep deprivation and chronic illness. Additionally, I do not have selective memory. God knows I wish I did. There is nothing more frustrating than not being able to remember. The reality is, some days I simply do not have what you have, and that is short-term memory.

My Good Days

If you see me smiling, moving around, and functioning normally, please do not take for granted that I am well. I may be having a good day, but I am not cured. I fight and suffer from chronic pain and fatigue with no cure in sight. However, I will have my good days, weeks, and maybe even months, yet I still hurt to some capacity. In actuality, good days are what keep me going.

My Intolerance

You may not understand, but please realize that my tolerance for certain extremes is nonexistent. You may see me sweat profusely because of the heat or humidity. Yet you may see me shiver uncontrollably when I am cold. You know the internal thermostat we have built inside of us? Well, mine is broken, and doctors, specialists, nurses, and scientists have no idea how to fix it or me. Either way, I am embarrassed by both, so please do not feel compelled to point out this inadequacy. I am fully aware of what is going on with my broken thermostat and what I am feeling. Hopefully, you understand now, too.

My Need for Therapy

Getting a massage once a week or even twice a month is not something to envy or wish for. Why? Here is some food for thought. Have you ever had a paper cut? You know how painful those can be. Think about this: how would a massage feel if you had the pain of paper cuts all over your body during the massage? Have you ever burned yourself on a heated iron, stove, or from fireworks? You recognize this pain and understand how severe it can be. How do you think a massage would feel while having this type of pain? Lastly, have you ever had a charley horse in your arm, leg, back, or foot? Imagine that pain all over your body while getting a massage. Your massage is not my massage. Sometimes it can be a painful pleasure. The pleasure sometimes comes when the pain is massaged out of my pain pockets, even if only on a temporary basis.

My Pain

Pain is pain, right? Wrong. My pain is not your pain. It is not caused by simple inflammation, where I can pop a pill and in 10 to 20 minutes it is gone. I cannot work my pain out or shake it off. This pain does not only hurt in one place. It is not region-specific within my body. For example, today my shoulder could hurt, but later it may be in my foot, my neck, my lower back, or even my chest. My pain is caused by my immune system attacking my own body, possibly complicated by sleep disorders and other overlapping illnesses related to autoimmune disease. It is not well understood, but it is incredibly real and very painful.

My Sensitivities

My sensitivities can send me into a complete tizzy. I absolutely cannot stand it. "It" could include, but is not limited to, bright lights, cologne, high or loud-pitched noises, perfume, or odors. Autoimmune disease has been called the "aggravating everything disorder." I ask you to try to understand my humble decision to decline certain invitations or if I need to leave suddenly. It is no fault of yours. My surroundings have caused a flare-up.

My Stress

Neither I nor my body handles stress well. Stress is the onset of autoimmune flare-ups. You may witness me having spasms or twitching. I quickly develop burning sensations where it feels like I have been set on fire, and the chronic pain is all over my body. Its heightened stage is far beyond the common pain chart number of 10. If I could say double or even triple that number, I certainly would. At this point, even strong medications may or may not work. Sometimes, not being able to work full-time is not a dream, a wish, or a sign of being lazy. For autoimmune fighters, it is reality. It is disheartening to be called a faker, lazy, or even crazy, which makes autoimmune fighters work seven times harder to prove a point. Yet we literally pay for it at the end of the day by lying in bed, on the couch, or on the floor, unable to move, all just to prove we are not faking. Sadly, for the next two to three days, our bodies are at a point of no return until our muscles, tendons, and joints regroup. Understanding autoimmune disease is simply understanding that stress makes my symptoms worse and can incapacitate me completely.

My Uniqueness

Even though we autoimmune fighters have been given similar diagnoses, we are not alike. This means not every autoimmune sufferer may have all the symptoms mentioned above, but could have other unmentioned troubles, or share one or more of the same symptoms. The reality is that no two autoimmune fighters are the same. My anguish is not the same as someone else's. Ironically, this is what makes us all "as one" and simply unique.

My Weight

My weight is a personal yet private fight. I may be thin, but I could gain weight next month. Either way, it is not by choice. We all want the perfect balance, right? Unfortunately, it does not work that way. The medications I take will make me either gain or lose weight and may increase or decrease my appetite. Nevertheless, due to the multifaceted nature of additional illnesses related to autoimmune disease, weight is surely a problem for me and other autoimmune fighters. Hearing or being told our bodies are not perfect only adds to our pain.

My Hope

Now that you have learned about me, I ask: will you lay aside the prejudgments you have or had about me? Are you ready to walk in my shoes? More importantly, are you willing to stand beside me with compassion, patience, and understanding? Because that is all I truly need.