This was turning into a very long facebook post, and I decided maybe it was time to start writing again... "
"So great to see that you are better."
"So glad you are healthy again."
I am beginning to hear comments like this daily, and I appreciate that people notice, that yes, after how incredibly sick I was last year, I am doing much better. Several years ago, I would not have said much more than, thank you and still today I say the same. Often because it is easier and they have already made the statement. If instead someone were to ask the question, "Are you feeling better?" the most simple response to this question is, No.
The truth is although I am not as sick as I was, I may never be "better." Ashamed, embarrassed, not wanting to be labeled as a hypochondriac, and being doubted, left me covering up what I was feeling. I felt isolated and alone. Today I can't say I will be better, but what I can say, is that I am going to be my best, and that is all the hope that I need.
I am sharing this with you all because I think part of being and doing my best, is sharing, in the hopes I can make a difference, and in the hopes I can create more awareness.
There are too many people who suffer in our medical system without a voice. They go from doctor to doctor, test to test, without answers. Our system excels for the most part, with treating acute illness, but when it comes to chronic illness, we are leaving people helpless and hopeless.
I have had medical issues my whole life, but as a child most of it was minor inconveniences, like my migraines which began when I was 3. When I was 19, this changed a great deal, and I started having all sorts of bizarre, "you must be crazy" kind of symptoms. I was scared. I was positive something was wrong, and doctor after doctor, test after test, I was repetitively told "you are as healthy as can be" but I certainly did not feel healthy. I was treated like a guinea pig. They would prescribe me cardiac medications while telling me nothing was wrong. I quit going to doctors. I gave up on them, when I realized they had given up on me. Don't ever give up on yourself.
After a year and a half, my symptoms became more manageable on a daily basis, and would more or less come and go. Several years ago, I started having many more neurological symptoms, so I went back to doctors and was still left without answers.
What upsets me the most, was that I was diagnosed with a condition called POTS({postural orthostatic tachycardia syndrome) and was
never told about the diagnosis.Yes, you read that right, the doctors never bothered to mention that maybe this was what was making me feel like I was going to pass out all of the time. Last year, pregnant, I became so symptomatic, there was no more avoiding or hiding what was going on. I was too sick and I needed help. It was also finally obvious something was seriously wrong. The doctors still had no answers. I started researching more on my own, and that was when I learned about dysautonomias and more specifically POTS. I went searching through all of my old medical records and found that in fact, when I was 19, I was diagnosed with POTS. Words can not express the plethora of emotions this stirred in me.
The awareness of rare genetic diseases, and autoimmune diseases, even in the medical community, is frightening. I didn't even know there were conditions such as dysautonomias, and I had an A average in nursing school! My cardiologist for the past 11 years only provided me with the explanation of, "yeah, this is just one of those things people are diagnosed with when we don't know what is wrong with them." 11 years later, extremely sick and pregnant, this was an unacceptable response and it took a lot of self control not to lose it on him. That is just a small glimpse of how ignorant some doctors are about this. Luckily I found doctors who took very great care of me while I was pregnant, and I am so grateful for them. I believe because they listened to me and treated me accordingly, my daughter and I were able to have such a positive outcome.
I spend a great deal of time reading research articles because I have to advocate for myself, and unfortunately for Bean as well. Although Bean so far does not have POTS, he does seem to have another disorder I have also been diagnosed with. This disorder is Ehlers-Danlos Syndrome (EDS), the joint hypermobility variant. My EDS diagnosis and POTS diagnosis explain a great deal of all of my "you must be crazy" kind of symptoms, and they typically coincide with one another. The more I read, the more I understand myself and everything I have felt and feel. Bean and I have very different symptoms of EDS, as it is a genetic condition and affects everyone a little different, but it is nice to know what is going on.
I can sit here and say I wish I knew then what I know now, but there is no point in living in that space. I know through my own experiences as a patient, and also through my education, that the best way to advocate, is to be informed. I have been sick so often since graduating from nursing school, I often wonder the purpose of all of that stress, if I can not help others. However, I am thankful for my education because it provided me with tools to help myself. In nursing school, I learned the importance of caring, informed consent, and treating the whole person. This drives me to want to spread awareness. No one should have to go through this journey we call life, feeling alone.
I never knew what to expect when I finally had a label for what was wrong with me. I desperately wanted answers for so long, but I never really thought what it was going to provide me with.
What it did do, was it made my health issues very concrete. I realized this was not just going to disappear, the way it appeared in my life, completely uninvited. My husband one day looked at me and said, "Did you think after 10 years this was just going to go away."
"I looked at him and said "yes." That yes was so genuine, and I guess it was na
ïve.
That was the day it all started to really sink in. I have a weakness. I have a vulnerability. I have a label. This is not completely temporary. I am going to have to stop making myself sicker by stubbornly pushing myself to "suck it up", as my body suffers. So in some ways, I am thankful I did not know what was wrong, as there are experiences I gained from this.
Another thing having a diagnosis did, was it brought me to the realization that I am not alone.
"Oh my goodness, there are so many people with these conditions." Now I know many of them. At first
this made me sad, especially discovering that many of them are struggling daily. The part that really made me sad was the thought that there were people out there undiagnosed, being told nothing was wrong, and desperately wanting an answer.
What this diagnosis did not do, was take away my hope. It is this hope that was what finally made me decide to be more public about this.
When I was 19, I felt hopeless. I went to doctors. I depended on them. I put my faith in them. I took the medications they gave me, and became sicker. I had no medical knowledge, and when they couldn't provide me with anything, I began to lose hope. So many people around me decided nothing was wrong because the doctors found nothing and so often people use to tell me it was going to be ok. No one wants to be told they aren't feeling what they are feeling. No one wants to be told it is going to be ok, when in fact it is not ok. My hopelessness was the worst. No one should be left feeling hopeless.
Now, hope is what gets me through my most difficult days. Hope is what I find when I feel weak, exhausted, and ready to give up. There is always a reason to be hopeful, even if it is simply just the idea of hope itself. I am not here to be a positive example for anyone else, or live up to anyone's standards of how I should "do" being sick. I am not less because I am sick. I am not less because I have days where I come very close to feeling hopeless and I have little to give. I have bad days and good days just like everyone else. I am here because if my ramblings can help anyone, or at the very least give them hope, I feel the need to share my journey.
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