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I’m the face of an invisible illness.
This month is Dysautonomia Awareness Month, and as POTS is under the umbrella of dyantonomia (those illnesses that cause disruption in the autonomic nervous system), I knew that I needed to post.
I am the face of an invisible illness, POTS. It’s invisible, and people often don’t know that I have an illness, and even friends and family can easily forgot. People don’t see the struggle I experience.
People don’t see the fact that I have a bad headache every single day, no matter what I do. I’ve had a headache for almost 13 years, and have had no relief from it. You can’t complain about headaches for 13 years, so I stay quiet. I can’t give up my life for 13 years, so I continue to do what I want to do, trying to ignore and cope with the pain.
People don’t see the migraines that I get, the migraines that can last 3 weeks with no relief. They don’t see the times I sit in the ER getting an IV because I can’t stand the pain any longer. They don’t see me waking up in the middle of the night to take more medication, because if I don’t, I’ll wake up and throw up because of the pain. They don’t see it because it is invisible.
They don’t see all the times that I throw up because of intense stomach pain, or the pain that comes with the issues to my digestion. I stand up quietly and throw up, coming out and resuming whatever I’ve been previously doing. I can be at a friend’s house and throw up because of pain, and they’ll never know. Because I have an invisible illness.
People don’t see the intense pain and knots I get in my shoulders and back (suboccipital and paracervical pain due to poor blood flow) that makes me dizzy at times. I give up an hour many evenings a week to lay on tennis balls, ice packs, or heat pads to try to decrease some of that pain. They don’t see the time I spend on that, and they can’t feel the pain I feel.
People don’t see the times I almost pass out when I stand up. They don’t see how swollen my legs get due to blood pooling, how painful it is to take a step. They don’t see the times I have to sit down while showering because standing in one place for 10 minutes makes me really dizzy (I feel that it is pathetic that I can run a half marathon but standing in place without moving for more than a few minutes can make me pass out).
They don’t see the intense pain I get when I eat, but what choice do I have? We have to keep eating, keep getting good nutrition. So I force myself to eat, knowing that I’ll get stabbing pains when I do.
People don’t experience my crazy heart rhythms that make it impossible to sleep. I lose hours of sleep every week due to the insomnia that comes with POTS.
People don’t experience the deep pain I feel, where every fiber of my body is screaming, where even laying down brings me to tears. I can be in the same room, watching TV with people, and they may never know. Because I have an invisible illness, POTS.
I worry that I’ll never be able to get pregnant because of my illness, because I rely on my medications to allow myself to function. I celebrate my friends pregnancies because I am so excited for them, and cry behind closed doors because my heart breaks for myself. I’m alone in that pain, in that worry, in that heartbreak. I long for people who will say “Let me mourn with you. Let me hold space in your worry.”
I can’t leave the house without making sure I have several medications with me. When I go out biking or hiking, or even to the grocery store, I carry salt and migraine medications with me. I don’t travel without compression sleeves or socks.
I’ve figured out how to manage, because I don’t want to give up my life. I put on a brave face every morning when I wake up, knowing that standing up will send my body screaming in pain. I take a deep breath every time I eat a meal, knowing the pain that will follow. But I smile, and I laugh, and I love, because this is the one shot at life that I get, and I don’t want to waste it. And I know that people have it worse than I.
I have lived with POTS for almost 13 years. It’s hard to experience illness for that long, not knowing when it will go away. I choose to live with hope.
I am the face of an invisible illness.
To read more about my journey with POTS, check out my POTS page. Here are a few specific posts to start with:
- POTS- What Caused It? The beginning of my journey…
- 30 Things You May Not Know About Life With POTS
- Loss of Energy with POTS
- Dear Parent of Someone Diagnosed with a Chronic Illness
- 5 Things I Wish People Understood About Having a Chronic Illness
- But You Don’t Look Sick
I cannot even imagine. How hard it must be to be going through this without everyone understanding.
I try to let go of my frustration when I remember that often there is no way for them to really empathize, but gosh, yes, I do get frustrated on occasion.
Thank you so much for sharing your story! I am living with POTS too, and it has brought me such comfort and sanity to know I am not alone! I love to run as well, and have always been encouraged by your accomplishments!! Thank you for your bravery, for sharing your story, and for your amazingly positive attitude!!
Thank you so much for your kind words Sara! I especially love to meet others with POTS who love to run. It’s an interesting community among ourselves 🙂
[…] Like I posted about last week, this month is Dysautonomia Awareness Month. Because of that, there are all sorts of extra videos and infographics that I’m seeing on facebook. I ran across this video that gives a basic description of what POTS is, and has some short little interview clips with doctors. […]
I cried reading your post. Out of heart break, anger, frustration and disbelief. I was recently diagnosed with POTS after 10 years of going from doctor to doctor complaining about my symptoms but being told it was in my head and that physically I was healthy. And even now with a diagnosis the more I read about it the more hope I lose because I have no idea what to expect. I’m terrified. I blacked out a few weeks ago stepping out of the shower. Have episodes where I can’t breathe at work and feel like I need to hide to let them ride out. I thought I was losing my mind for so long and have no one that can relate to me or knows what I’m going through… i didn’t even know POTS was a thing until recently. Thank you for sharing your story although I don’t know you it’s comforting to know we are not alone.
Hi Mia! Thanks so much for reaching out. I’m sorry that you have POTS (I know how tough it is!) but I’m relieved for you that you now know what’s been going on with your body! A diagnosis is full of relief and grief, isn’t it. Making progress takes time- know that while it’s slow it is possible. Compression sleeves, a beta blocker, migraine meds, Nuun tablets, and salt are my best friends 🙂 haha.