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Your heart is beating so loudly in your ears that the sound is deafening. The sweat beads begin forming along your spine. You clench your fists as you struggle to breathe.

Anxiety can be described as an excessive state of uneasiness. However, for those impacted regularly, it is much more than that. These sensations, even if only for a moment, can be crippling.

The surge and severity of anxiety vary amongst individuals. Factors such as environment, status, and wellness also play a role in anxiety.

Undoubtedly, suffering from an unpredictable illness only makes matters a bit more complicated. When systemic mastocytosis (SM) took control of my life, anxiety did too. Not only do we suffer from allergic responses, but several other bodily misfires. Tremors with tachycardia and disorientation are major sources of anxiety that impact my daily life. 

The checklist for most people when they leave their homes includes keys, phone, wallet, etc. They check those off and leave for the day. I start my list the same way but must add on a few more essentials: sunglasses (because I cannot tolerate more than dim lighting),  sunblock, EpiPen®, mask, rescue medications, and eye drops. An antihistamine is also a must in the event that I touched something that caused body hives. 

Certainly, I cannot leave without my pain medications. Once the pain starts in my muscles it quickly seeps into my bones. And then there’s the duffle bag full of extra clothes I take with me everywhere: 3 tops for the sweating, a pair of stretchy pants for the bloating, and a change of shoes in case my feet swell. I’ll need aloe for facial flushing, too. Lastly, several bottles of water to counteract the dehydration from taking antihistamines.

And a final footnote: it probably isn’t a bad idea to have my evening dose of medications in case I get caught in traffic. 

Read about experimental therapies for SM

Surely, I can find a way to cope with the anxiety of sweat pouring down my face and body in public without a change of clothes and just wear my embarrassment instead. However, if I forget anything on my list, panic ensues. Being caught in the checkout line, for example, while my skin begins to burn, my eyes water, and my throat gets tight with no rescue medicine means it may be lights out.

SM reactions can be triggered without the involvement of a known allergen. With SM, anxiety will also cause allergic inflammation to be magnified. This can make a mild response to an allergen a dangerous one. 

These allergic reactions are not the only things to be anxious about. At any point, the onset of tremors or disorientation may crash over me like a high, hard wave. Imagine taking a drive to work and suddenly having no idea where you are, where you are going, or what car you are in. That is true terror. 

Oftentimes I am preparing for my day just as anyone would. Then without warning, my motor function mimics that of a Parkinson’s patient. Quivering with every movement as my arms, legs, back, and face tremble uncontrollably. Surely, I won’t be going anywhere until that passes, which could take hours. 

This leaves me in a constant state of anxiety as I read every signal my body gives me hoping to make it to the next place I have to get to before the next bout. As a single woman with minimal support in my immediate calling range, I have been forced to cancel plans, sit for hours in parking lots and ride out the storm of my symptoms until it is safe for me to continue my day. 

In short, anxiety is not an unfamiliar foe for many. In one way or another, we have all experienced its grasp and discomfort. Those of us living with SM have learned that anxiety is now a part of our everyday lives. I have learned to cope with this beastly feeling by embracing its warnings and understanding that this is my reality now.

If you are a family member or medical care staff for someone suffering from SM, please remember we are fighting many invisible battles.