Living with a Chronic Illness: POTS, postural orthostatic tachycardia syndrome

Marbles falling from a jar, chronic illness hero

So I may not be the best person to write about living with a chronic illness, after all, I do not have one. You should probably take everything that I say with a grain (or fifty) of salt. I do not speak for this community, but as someone who has a sister with a chronic illness, I think I am beginning to understand a little bit about how difficult it is. I recently gained some enlightenment into the experience of having a recurring health problem that affects daily life and activities.

I’ll start off by telling you a bit about my sister, who she was then, and who she is now. Before her diagnosis, she was a twenty-something in the process of earning her PhD from Johns Hopkins. She was independent, living in Baltimore, and a regular coffee drinker. She was an adventurer and loved to walk long distances, especially inclined to living in New York City and strolling for blocks at a brisk city girl pace.

When she was diagnosed with POTS (postural orthostatic tachycardia syndrome) her whole life changed course. She cannot drink coffee ever again, walk long distances, and she moved home to live with our mother not long ago.

Her life was turned upside down in more ways than one.

As her sister, I can do my best to sympathize and to support her in every way possible. However, it was not until I began to suffer from a illness of my own that I truly began to understand her struggle. As most know, I live in West Africa. I enjoy long walks, outdoor adventures, and going to the gym. I love biking, camping, hiking and the outdoors. A couple of weeks ago I began to suffer, rather severely, from a heat rash. Although the rash seems to have faded, any time I exercise, sweat, or go out in the sun, the rash comes back. As you might imagine, living in Ghana, it is a bit difficult to avoid the sun.

I feel miserable. I cannot go outside for long, I certainly cannot go to the gym. I cannot engage in any activities that I love without becoming a hot, itchy mess. Other than reading entire novels daily during the past few weeks, I hide out in the AC at work and at home. I simply do not know what to do with myself. I am depressed. I miss doing what I love doing, and have no idea when or if I will be able to do those things again.

It is in this moment when sympathy started rolling in from friends and colleagues that I began to understand my sister’s plight.

When someone is suffering there are plenty of comments made from friends and family. Here are a few:

  • Don’t worry, it will get better in time.
  • Just be patient.
  • Pray to God or ask God for help.
  • Try doing something else instead.
  • Just push through the pain/problem until you persevere.
  • It’s not as bad as you think it is.

Listening to these comments, mostly made out of sympathy and fully intended to help, I have never felt angrier or more sad and frustrated. I have never felt so alone. And I have only been suffering for two weeks. I know that people are trying to help with their comments, I would try to help as well if I saw such a sad friend.

The odd thing is, these comments do not stop me from feeling sad and angry. In fact, they make me feel more alone, because I realize that no one will ever be able, with words, give me back the things I love that I have lost. It is in this moment, when sympathy started rolling in from friends and colleagues, that I began to understand my sister’s plight.

I know that heat rashes most likely do not last forever. I have no idea when the symptoms will go away, but it is likely they will not persist for years. My sister’s POTS may never leave her, and she has to change her lifestyle permanently. She has to suffer through things I could never imagine, such as drinking gallons of salt water daily. I know how lucky I am that all I suffer from is a heat rash, but at the same time, sitting alone in the AC while my friends are at the nightly aerobics class, I feel awful. Even if it is just a tiny shred of the awful my sister must be feeling right now, I can begin to understand her.

Some things, like chronic illness, no amount of sympathy and love can change.

Some things, like chronic illness, no amount of sympathy or love can change. Positive comments from family and friends will come, you may know they mean well, but it does not change your life. Anger will come, sadness will come. You can, as I have found, distract yourself with a good book. You can treat yourself to chocolate and a good cry.

It is normal to feel sad and angry. I do not know when or if this heat rash will allow me to do the things I love again. There are other things I can do, and will be able to do. It is okay to throw myself into those, and it is okay to continue mourning the loss of what I wish I were doing.

Ultimately, I have no idea what it feels like to be my sister, and I never will. There’s a high probability that in a few weeks’ time I will be back to my normal self. I hope so, and statistically, I know so. More importantly, I understand, to the slightest degree, my sister and her new life with chronic illness.

Maybe I cannot tell her anything that will make her feel better or feel understood. I can simply say I love you, let’s watch a movie. I love you, I am here for you. I love you, I know you feel sad/mad/lonely/depressed and that is okay. I would too.