A Different Normal

By Maya Brown-Zimmerman

How many of you know what it’s like to be living with an “invisible illness?”  Do you have a condition that affects every part of your life yet people assume you are fine because you look fine? I have Marfan syndrome, a genetic disorder that can cause problems in nearly every major body system. While there are skeletal manifestations, many times those symptoms are also found in the general population (just not all together), so you wouldn’t necessarily look at me and peg me as someone with a “condition.”

I don’t know how many times someone has made a remark about me taking the elevator, not “pulling my weight” or, my favorite, “you don’t look like there’s anything wrong with you.” While that is annoying, nothing has been as frustrating as the difficulty in being taken seriously by a doctor.

My mother knew there was something not typical about me shortly after birth. Although I was much longer than other babies in the family, needed multiple surgeries in my first year of life and was slow to meet physical developmental milestones, doctors continued to insist that I was just fine and that my mother was a paranoid first-time mom. Looking back, I’m pretty lucky that my pediatrician eventually recognized the physical manifestations of Marfan when I was 8 years old; too many “Marfs” don’t get diagnosed until much later in life…often in the ER when they’re having an aortic dissection (a tear in the large artery that takes blood away from the heart, which is always very serious and can be fatal) or in the morgue. Part of what makes Marfan tricky is that individually, many of the symptoms are common. These include being tall (but sometimes just tall for your family), very flexible, having a curved back (scoliosis) and having long fingers. However, when all these symptoms appear together in one person, it warrants a closer look and an echocardiogram to check the heart valves and aorta is necessary. There are no outward symptoms of potentially life-threatening aortic enlargement.

Of course, Marfan syndrome isn’t the only invisible illness. In November, I heard from many of you with fibromyalgia, a disease with no physical manifestations, which causes debilitating pain. Rheumatoid arthritis is another painful, hard-to-detect illness. My three-year-old son has autism and, much as people seem to think there is one, I’ve yet to find a mark on his body that reads “this is what autism looks like.”

So we need to try to keep in mind that we don’t know everyone’s struggle. That seemingly able person with the handicap placard might use it because fibromyalgia makes it too painful to walk, or because Ehlers-Danlos syndrome causes their joints to dislocate. The teen walking instead of running in gym might have a heart condition. That child having a meltdown in the grocery store may be having a sensory overload due to autism or sensory processing disorder. And if you think someone around you might have an invisible illness and not know it, don’t be afraid to gently speak up. You might save a life!

Do you have an invisible illness? How did you get it diagnosed? How do you handle people being less-than-tolerant of you because your disability is not readily apparent? Share your thoughts in the comments below or in our Chronic Conditions community.

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

By Krista Kellogg

For many, staring down the barrel of chronic disease for the first time is deeply frightening. It’s not easy when you realize that “chronic” really means “forever.” There is an evolution of emotion that takes place when you face this most personal of betrayals, that of your own body against itself. You feel broken, spoiled, like damaged goods with no return policy. In many ways, you go through the five stages of grief: denial, anger, bargaining, depression and acceptance. I meet hundreds of psoriasis and psoriatic arthritis patients like me, working their way through the process, through the pain, through the embarrassment, through the disappointment of failed treatments. The waves of disease can be unrelenting and unforgiving, wearing down your resolve and wellbeing. It takes great effort, preparation and maintenance to steel yourself against the ever coming tide of aches, flakes and cracks.

One of the most critically important aspects of proper disease management is finding and establishing a healthy relationship with your physician or physician assistant (“PA”). Time and time again, I hear from people who are struggling with their psoriasis and one of the most common themes of the struggle is a frustrating or dissatisfied relationship with their dermatologist or rheumatologist. In my experience, not until you identify a physician or PA who is both qualified and committed can you begin to move through the phases of the chronic disease journey to full-blown acceptance.

When you have a chronic disease, a long-term patient-doctor relationship that is built on mutual respect, open communication, trust and compliance is fundamental. The other half of the equation is a commitment to yourself — a commitment (and the confidence) to ask for what you need, to demand the best and most comprehensive care, and muster the courage to move on if you are dissatisfied.

As with many chronic diseases like psoriasis and psoriatic arthritis, there are a host of ancillary health considerations that come with the territory.  These can range from psycho-social and self-esteem issues to associated diseases like heart disease and obesity. Because of these inherent complexities, it is our responsibility to seek the best and most thorough approach to treatment. Because of these complexities, it is also easy to become overwhelmed and confused.

One way to combat the confusion and find a healthcare provider who is also a partner is to know your rights as a patient. The National Psoriasis Foundation has published a “Patient Bill of Rights” that is an excellent affirmation of such rights.  While it addresses the psoriasis patient, it translates easily to other chronic conditions and is a reminder to all of us to take our health and overall wellbeing seriously and to demand that our healthcare providers do the same.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

By Peter Abaci

If you are reading this post, you are probably already well-versed in how chronic pain can interrupt your own — or a loved one’s — ability to perform simple activities and function on a day-to-day basis. You may even start off your day dreading the thought of just trying to get through it. When we hurt, we tend to shut down physically and even emotionally. It is our natural tendency to protect a part of our body that has been injured or is uncomfortable. If our right leg hurts, then we naturally shift our weight to our left leg. This basic, inherent guarded behavior pattern can be considered protective at times of acute injury. When we first sprain our ankle, staying off of it for a few weeks helps it heal.

Unfortunately, this behavior pattern loses its protective benefit once the condition lingers and/or the pain becomes more chronic. In fact, this avoidance behavior is generally believed by many pain experts to significantly contribute to the severity of chronic pain symptoms. The medical term for this is fear-avoidance, and it defines a thought process in which an individual fears the presence or potential exacerbation of pain to the point of avoiding activities. Unlike the acute injury model, developing fear-avoidant behaviors when dealing with chronic conditions becomes maladaptive in that it increases one’s physical disability and contributes to emotional distress.

Let’s go back to the example of the sprained ankle and suppose we stay off of it, not just for a few weeks, but rather for six months. In this scenario avoiding using the injured body part becomes harmful, as opposed to helpful, to the healing process. Staying off of the injured leg for a prolonged period of time can lead to all kinds of physical changes, including a stiffening of the joints, muscle atrophy throughout the whole limb, and scar tissue buildup. Physical changes will start to occur throughout the rest of the body as well, which will cause problems like postural changes and overuse of other parts like the uninjured leg. Once we become fearful of re-engaging our bodies after it is in pain or has been injured, then this avoidance behavior gradually leads to changes that ultimately leave us much more disabled and, sadly, in even more pain.

Inactivity and avoidance should be considered painful. In the example above where we stop using one of our legs for six months, you can imagine that the leg will hurt more and more as it gets weaker and stiffer, and the longer we wait, the more it will hurt when we try to use it. If we continue to over-use our good leg, then it will also start to hurt from the excessive pressure exerted on it. In my experience, disrupted gait patterns eventually lead to lower back pain, too. Now, if we add assistive devices like canes or crutches, then we run the risk of straining our hands, arms and shoulders, too. Before you know it, we are practically hurting all over.

Overcoming fear-avoidance is tricky business, but an important part of winning the battle against pain. Our pain changes the way we think and makes it difficult for us to recognize when we have developed irrational fears or behavior patterns that stand in the way of getting better and feeling better. Most folks need some help seeing past the pain to start believing that moving something that hurts will eventually help make it stronger and less painful. For some, working with experts in movement like high-quality physical therapists, Pilates instructors, or trainers can help get the ball rolling. In other cases, learning tools to better manage anxiety and fear through special techniques like relaxation training and breathing exercises can have a big impact. Achieving just small but steady gains over time can eventually lead to larger triumphs and personal transformations. I routinely see patients come in with walkers, canes, and all sorts of physical limitations that are able to learn how to walk, climb stairs and, in some cases, even jog on a treadmill. Overcoming chronic pain can mean working through some serious fears and misconceptions about your condition, but the rewards make it so worth it.

Peter Abaci, MD, is the Medical Director of the nationally recognized Bay Area Pain and Wellness Center, located in Los Gatos, California. A widely respected expert on chronic pain management and a highly successful chronic pain sufferer, he is the author of Take Charge of Your Chronic Pain: The Latest Research, Cutting-Edge Tools, and Alternative Treatments for Feeling Better.