7 things i have learned in 7 years of illness…

Friday was the seven year anniversary of the day I was diagnosed with postural orthostatic tachycardia syndrome (POTS). I celebrate anniversaries and momentous days because I think they provide opportunities for reflection and growth. Although my POTSiversary (the anniversary of my POTS diagnosis) is always bittersweet, it reminds me that I have come so far from the days of literally having to crawl to the bathroom. I have learned a lot since that lonely day seven years ago when I left the hospital with a diagnosis in hand, uncertain where to go from there.

In the months after the diagnosis, I slowly emerged from my somber cocoon and began to research POTS and search for answers. I read a lot of journal articles, watched a lot of videos, and asked a lot of questions. I joined support groups, made connections and hosted meetups. These days I’m less active in the POTS support community, but because I don’t feel the need to lean on that crutch as heavily, not because the community ceased having value.

So in honor of my POTSiversary, I’m sharing 7 things I have learned over the past 7 years:

1. Some people’s POTS gets better. When the majority of exposure to other people with our same illness comes from online support groups, it’s easy to get overwhelmed by the negativity. Most group members are supportive and helpful, but few people post to tell you how amazing they feel that day. Or how most of their symptoms have subsided. All of the support group posts about declining health or new scary symptoms lead you to believe that no one ever gets better, but those who get better are no longer in need of support. They’re not in the groups, they’re out living their life. They may never be cured, but many do get their lives back.
   
2. Even if the illness doesn’t get better, you get better. In the beginning of my diagnosis, I would bask in the warm southern California sun, following advice from friends and family that I “just needed to get a little sun” and my symptoms would be better. I drank liters of water, but without complementing it with sodium. I walked on a treadmill or stair-stepper, convinced that the reason I was constantly out of breath was because I was out of shape. All of those things made my POTS worse. There’s a long period of trial and error, but eventually you learn that hot tubs make you dizzy, heat is not your friend, and crossing your legs while standing can help stave off the lightheadedness, at least for a little while. The illness may not be better, but YOU are better.
   
3. Life is too short for bad doctors. If you’re chronically ill, you’re going to be spending a lot of time in doctor’s offices. It comes with the territory. You will cry tears of joy when leaving an appointment with a doctor that finally “gets” you and your illness and, sadly, you will cry tears of frustration after visits with self-absorbed specialists that tell you it’s probably just anxiety, because men and women your age don’t get illnesses, despite thousands of years of evidence to the contrary. If a doctor doesn’t listen to you, if s/he won’t help you get the tests you need, or access your records, or if, god forbid, and I want you to walk out his/her office the minute this is muttered, you are told it is all in your head. There are wonderful, compassionate doctors out there. Find one.
4. Be your own advocate. Even if you’re fortunate enough to have great support from your family, friends and doctor, you are still going to have to advocate for yourself. Research your symptoms. Read journal articles. If you suspect you have a particular condition, ask to be tested. Even great doctors are taught to focus on their specialty. Getting diagnosed with an illness that affects multiple body systems like POTS can be difficult because you will be sent to different specialists to treat the tachycardia, muscle weakness, headaches, and dizziness. Those specialists don’t talk to each other, so no one ever steps back and looks at the big picture. You have to show it to them. Bring journal articles about an illness you suspect to your doctor. Ask for blood tests, and if they refuse, order your own. You hold all the pieces. Ask for help in putting the puzzle together.

   

5. Be kind to your body. It’s so easy to get down on yourself. You’re frustrated that you missed your sister’s baby shower, or you had to cancel on friends visiting from out-of-town, even after taking it easy for a few days prior. It feels like your body always lets you down, even after following all those remedies that improved symptoms of others in your support group. But don’t overlook the many ways your body is working hard to support you. Take good care of it.
6. Be honest about how you’re feeling. If you’re like me, you answer the age old question of “how are you doing?” with as few words as possible. “Fine.” “Good.” If it’s a particularly bad day, perhaps I respond with “tired.” But friends and family know they have to coax a little more out of me to get the truth. I don’t want to ruin someone else’s day with gloomy descriptions of mine, but at the same time, I’m not doing anyone any favors by minimizing my symptoms. Those of us with chronic illnesses can’t get upset when friends and family assume we’re getting better if we consistently respond positively to inquiries. If you’re having a particularly symptomatic day, tell people. Answer honestly. Let them see how your illness affects you. Compassion is a common language among humans, but sometimes you have to initiate the conversation.
7. Nothing happens overnight. We live in a world of quick fixes and instant gratification. We have come to expect immediate results because that’s what we’re promised on overzealous infomercials and faded labels. But chronic illness is an exercise in patience. Treating it may be the longest waiting game of your life. It can take years to see results, positive or negative, from that new supplement, or a change in medication, or acupuncture or biofeedback or IVIG or whatever may be the treatment du jour. Give it time and an open mind. Your health is worth both.

Friends, I would love to hear what you have learned in the years since your diagnosis!

“Sometimes the questions are complicated and the answers are simple.” – Dr. Seuss

Smell ya later.
– Linds