"A disability is just as stressful if it’s invisible"

Interview with Katarina B.

01/03/2017

"But you don’t look sick!" That’s a sentence, Katarina B. hears far too often. The woman from Switzerland lives with multiple sclerosis (MS) and attention deficit hyperactivity disorder (ADHD) diagnosed later in her life. The symptoms she is dealing with on a daily basis are invisible to outsiders. But they are still there – around-the-clock.

Photo: Katarina B. makes a selfie in front of a mirror; Copyright: staublos.ch

Katarina B.: Her disabilities are invisible for other people; © staublos.ch

REHACARE.com spoke with the mother of two about her family life and asked how these two diagnoses impact her everyday life.

Katarina, you live with both MS and ADHD. How exactly do they manifest themselves?

Katarina B.: That’s right, I have a dual diagnosis, which causes different limitations in my daily life that are not actually visible. I received my MS diagnosis (so far a chronic incurable autoimmune disease that affects the central nervous system) in 2013 and due to the various symptoms, I was also diagnosed with ADHD. Unfortunately, both of these disorders don’t really work so well together. MS requires rest and takes a lot of energy away. Meanwhile, my ADHD requires lots of action and adrenaline for me to feel good in my body; stress makes me happy. That’s two extremes I have to juggle somehow.

How do the different symptoms impact your life?

Katarina B.: My MS mostly affects my daily life due to tremendous fatigue. Unfortunately, plenty of sleep does not help to combat this chronic exhaustion. It also feels very different from normal fatigue. Fatigue also impacts my cognitive functions. It’s not just my body that’s tired, but also my head. I am getting forgetful, get easily sidetracked, need an enormous amount of strength to concentrate on just one thing and am unable to think clearly at times. This type of exhaustion feels as if the last drops of strength are being sucked out of your body. That’s when ADHD comes into play and makes everything even more complicated. People with ADHD are sometimes labeled as being "fidgety" and this totally applies to me! Unfortunately, the combination of adrenaline and cortisol is rather unfortunate with MS because stress can trigger MS activity.

How does this affect your family life?

Katarina B.: My family and I had to learn to live with these limitations and grow up with them so to speak. My children were still small when I received my diagnosis. We quickly decided to discuss the disorders very openly with our children. The limitations associated with MD and ADHD have made me extremely sensitive to sensory overload. Yet everyday life with children is loud and active, there are tons of noises, children’s laughter and crying and lots more. Unfortunately, I sometimes become overstimulated, which can then also manifest in physical pain. Exhaustion is my biggest problem because it usually starts around 3 pm. But that’s the time when my children come home from afternoon classes and have to do homework. I have to muster up all of what’s left of my strength for this, which is enormously exhausting and taxing. The fact that my children have to grow up with a sick mother takes away a part of their happy childhood. Yet I still believe I can be a great role model for my children by having a positive attitude about all of it.

How does your husband respond to your limitations?

Katarina B.: My husband has stood by me since day one. Nevertheless, as the affected person you still wonder about the future: Will I become a burden to my partner some day? Will he need to completely take care of me at one point? How much can a person expect from his/her partner?

We found a good way of dealing with my different symptoms fairly quickly. The majority of them are invisible to others but my husband is directly affected by them. That’s why I have to clearly communicate and tell him if something is not working, when I am too tired and don’t have any strength left in my hands or legs for example. Oftentimes, my husband handles many household chores and children activities I used to handle. We complement each other well and sometimes just have to plan things more than we used to in the past.

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Photo: Katarina B. in her sports clothes; Copyright: staublos.ch

Katarina B. tries to work out and do sports on a regular basis - "despite or exactly because of MS", like she says; © staublos.ch

How open are you about these invisible disabilities?

Katarina B.: When I mention that I have MS and won’t be able to be actively engaged in a club, for example, people usually look at me in disbelief. That’s why I like to use the phrase, "But you don’t look sick", on social networks because it’s something I hear very often since all of my symptoms are invisible. However, that doesn’t mean they don’t exist. There is my dizziness, for example, my sensory issues, the fact that I am not able to sense temperature differences in most of my fingers and that my muscles tense up and many other things that people cannot see.

In everyday life, I play it by ear whether I tell another person about my disorders or not. However, it’s important to me to show people that a disability is just as stressful if it is invisible. Just because you don’t notice it at first glance, doesn’t mean you know what’s actually going on behind the scenes. You have to imagine it like an iceberg. The visible tip of it doesn’t really tell you how much of it actually lurks below the water.

Do you consider the invisibility of your disabilities more of an advantage or a drawback?

Katarina B.: On the one hand, there is an advantage in my disabilities being invisible. I don’t have to constantly explain myself. People don’t pity me or treat me with pity. That gives me a lot of freedom.

Yet, on the other hand, it is very cumbersome because I look very healthy on the outside. People constantly overestimate me and have higher expectations that I am sometimes not able to meet. I frequently have to explain why I am not able to do something. Sometimes I have to justify why I have a housekeeper for example and cannot do my own house chores. My constant exhaustion might be interpreted as laziness or my cognitive issues as indifference. People give me an odd look because I wobble due to my dizziness and when I walk funny. Or they are puzzled because some of my body parts are obviously twitching, which bothers the other person.

What would you like to see from people in terms of how they deal with invisible disabilities?

Katarina B.: Don’t be so quick to rush to snap judgments! Invisible disabilities are just as stressful and restrictive as visible ones. I wished I didn’t have to explain myself so much – just because my disabilities are invisible. Having said that, you cannot make generalizations about society as a whole; it always depends on the actual person you are dealing with at the time. I would also like to be less labeled and stigmatized. Since my disabilities are invisible and people didn’t know that I am included in this category, I was subjected to very offending remarks in the past such as, "People with MS are dumb, have a foggy brain, are very difficult, die quickly from their disease, they all get diabetes, they are simulating and people with MS are mentally ill." And I stand there and have to decide whether I should just ignore those remarks or correct these wrong assumptions.

More about Katarina B. (only in German) at: www.staublos.ch

Photo: Nadine Lormis; Copyright: B. Frommann

Nadine Lormis
(translated by Elena O'Meara)
REHACARE.com

"A disability is just as stressful if it’s invisible"

Interview with Katarina B.

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