What does the average person feel like on a daily basis?
I recently realized that I will never know the answer to that question.
My husband is my rock, but he is also my exact opposite in that he knows the answer to the above question – he can fall asleep within a few minutes, he can use as much energy as he wants for an activity, and recovers by the next day (example: he wants to deep clean the entire house in one day? done, and he is ready to go the next day), he can go to sleep at any hour and still wake up in time for work, no matter how little sleep (don’t get me wrong, 3 hours of sleep will still leave him tired, but he isn’t hitting the snooze button either).
I live with chronic illness – specifically, two autoimmune diseases known as Hashimoto’s Disease and Undifferentiated Connective Tissue Disorder – and in my 30 years I have never known what it feels like to function like my husband, to function like someone with no health issues.
Some of you reading this may be fellow spoonies or may have loved ones living with chronic illness, so I want to share a small piece of my journey so we can continue to grow in community.
If you are reading this and don’t know much about chronic illness, my intention is to share my experiences and continue to help raise awareness about the realities many of us live with.
Regardless of where you are on the “Spoonie” journey, I am going to break down a few key elements to get us started:
Every chronic illness is not an autoimmune disease, however, I do use the words interchangeably and the chronic illness/autoimmune community is made up of both parties. A chronic illness is, in simplest terms, exactly what its name suggests – a disease or illness that lasts for an extended period of time, typically for life. Chronic illness, as with any health issue, can come in many forms and in many varying degrees of severity. One key point to remember is that one person’s experience with chronic illness is never going to look exactly the same as someone else’s.
Autoimmune diseases are specifically the 100+ diseases that are caused by a blip in our autoimmune systems. Basically, something in our body perceives another part of our body as a threat, so your body responds like it would for any threat, and starts to attack it. Those of us wth autoimmune disease are bad asses for literally living every day with a body that keeps attacking itself.
Many of us in the autoimmune and chronic illness community talk about spoons alot. This stems from the spoon theory, which is a way to explain, and help manage our limited energy. With many autoimmune diseases, our bodies produce energy differently and in very finite terms.
The premise with the spoon theory is that we have X number of spoons a day. Each activity that we do uses spoons, and the more strenuous the activity, the more spoons we use. If we run out of spoons, we can “borrow” from the next day, but then we will be even lower the next day. Our energy is very explicitly finite, and we daily have to make choices about what activities to do, and often having to choose not to do things.
I received my first diagnosis in high school, I was a sophmore and after missing a month of school in the aggregate, we knew something was wrong. I was missing school because I would have many days where I felt so physically exhausted that I could not get out of bed, and I would end up sleeping all day, until dinner.
Blood tests and an evaluation of my symptoms with my doctor would show that I have Hashimoto’s Disease, which is a Thyroid Condition.
It was not until I was 24/25 that I received my second diagnosis. A fun yet unfortunate tidbit is that having one autoimmune disease can make you predisposed to have others. After my Hashimotos disease was well under control with medication ( I had several years where I didn’t even feel that I had a disease), I started to experience more intense symptoms: worse fatigue, rashes, join pain, join swelling, etc. I was referred to a specialist where I was diagnosed with Undifferentiated Connective Tissue Disease. (Where are my UCTD pals at?)
With this particular disease, I have markers for several other autoimmune diseases, but I have not fully developed into any one of them: Rheumatoid arhthrisits, Firbomayla, Lupus. What my body is attacking are my connective tissues, such as my joints, but there is always the potential that things could get worse. I take medication to help with flares and to protect my organs, in case my body gets worse.
Mental Health issues and chronic illness go hand in hand. It is literally the constant struggle with the “chicken or the egg” question. Having mental health issues, such as anxiety and depression, can cause chronic illness to flare in your body – but having chronic illness can also cause mental health issues to start. It really is a no win situation.
This was a very quick introduction to autoimmune diseases, and my own personal experiences. My hope is that it can be a starting point for community, education, and awareness.
I intend to have a an Ongoing Spoonie Series, and plan to cover every single autoimmune disease. If you have an autoimmune disease and would be interested in sharing your story, providing feedback, or guest writing (you can be anonymous if desired) please visit my contact page and send me note.