Learning to manage life with invisible chronic illness(es) is a challenge that can take a lifetime to overcome. Though the symptoms may start early on, there is such variability that it often takes years to get a diagnosis, and even longer to find a treatment plan that works. Along the way, we hit a particularly discouraging catch-22 situation: the things our doctors recommend to help ease the symptoms are the things we have the most difficulty with, specifically because of those symptoms. It’s an impossible cycle that adds immense frustration to an already troubling situation.
It hurts so much because I’m so tired because I can’t sleep because it hurts so much because I’m stressed because I can’t exercise because I’m so tired because…
With sarcoidosis and fibromyalgia come tremendous pain, swelling and debilitating fatigue. It can be difficult to perform many simple tasks, like opening a jar, lifting a half-gallon container of milk or taking a shower. At times, simply walking across the room or even getting out of bed can be nearly impossible. Doctors often say that regular exercise can be helpful in managing symptoms. What they fail to comprehend, however, is that when it’s so difficult to do even basic activities, the “moderate exercise” they suggest is like asking a “normal” person to complete a triathlon while wearing weighted sleeves on both arms and legs. They say we would feel better if we would exercise; we say we would be happy to exercise if only we felt better.
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Without being able to exercise, it’s difficult to maintain a healthy weight no matter how well we eat. Add in a slow metabolism due to an autoimmune thyroid disease, and it’s even harder. As if that wasn’t enough, the medications that treat sarcoidosis and fibromyalgia cause significant weight gain: in four years on steroids, I gained a lot of weight, making me heavier than I’d ever been in my life. Naturally, I now struggle with what I see in the mirror and the difficulty of finding clothes to fit me… but my self-image is only a drop in the bucket of complications those pounds bring. The excess weight makes all the other symptoms worse, and even creates new ones. Every pound gained adds an extra few pounds of pressure on the already troubled joints. The GERD I’ve had since I was a teenager has now escalated to hiatal hernia and erosive esophagitis. I’ve officially entered the medical category of morbid obesity, which means I have increased risk of diabetes, stroke and heart disease to look forward to. The doctors keep telling me I should lose weight, but continue to prescribe meds that only pack on the pounds.
Another complication surrounds sleep (or lack thereof). Fatigue is a common symptom of both fibromyalgia and sarcoidosis. Regardless of the time we spend in bed, we can literally become so tired it hurts. As a result of the extra weight I also developed sleep apnea, which only adds to that exhaustion. As if that were not enough, many people with fibromyalgia also struggle with insomnia. We have difficulty falling asleep and we have difficulty staying asleep, often as a result of the primary disease or its symptoms, or a side effect of the medications to treat it. With all this, doctors often tell us that if we can improve our sleep patterns, we will feel an improvement in our symptoms. Unfortunately, it is those symptoms – and the treatments for them – that keep us awake in the first place. We often toss and turn, trying (and failing) to find a comfortable position (we often refer to this as painsomnia). The CPAP machine to treat apnea can be so loud and uncomfortable that it prevents sleep more than it helps it. Most ironically, my sleep doctor prescribed a long-term program of sleep deprivation as a treatment for the insomnia.
The biggest catch-22 of all is the idea that stress exacerbates the symptoms. They tell us we should try to avoid stressful situations… but the idea of having an autoimmune/chronic/invisible illness is the biggest stressor of all. From the years of being dismissed and disregarded by doctors who claimed it was “all in our heads” to the years of doctors believing us but not being able to diagnose our diseases to the years of having a diagnosis but still not having it under control .. all of this is stressful. Pain is stressful. Fatigue is stressful. Weight gain is stressful. Insomnia is stressful. A growing list of symptoms, diagnoses, medications and side effects is stressful. Trying to maintain jobs, relationships, friendships, a household and a life while living with health problems is stressful. If we didn’t have these illnesses in the first place, we wouldn’t have all the stress about them that makes the symptoms worse, and stresses us out about how much worse it is all getting.
The implication that we could feel better if we would just exercise, lose weight, go to sleep at a reasonable hour and chill out is the most hurtful (and stressful) part of these diseases. These suggestions put the blame on us for our illnesses. They insinuate that we have the power to make it all go away, but we choose to remain sick. It is that idea that leads to greater challenges from employers and coworkers, friends and family members. When people don’t understand our illnesses and hear only those implications, they are left to believe that we are lazy, careless, attention-seeking, excuse-making manipulators. At best, they think we are mentally ill (depressed or hypochondriacs); at worst, they think we are liars. I can assure you, neither is the case.
What we need most (aside from a cure and better treatments) is to spread awareness about conditions such as fibromyalgia, sarcoidosis and other chronic/invisible illnesses. That’s why I’ve gotten involved with a number of patient-centered organizations that are dedicated to doing just that. Education is key to understanding, and that is the only way to truly relieve the stress that goes along with the diagnosis and subsequent catch-22 dilemmas.
I believe it is our responsibility – and our privilege – to join forces towards that end. Whether signing up as a volunteer, participating in a walkathon or simply talking to anyone we know, taking action not only serves an important purpose, but it gives us the confidence and sense of empowerment to get through another day. The best part about it? We can get through that day together.