What I Want People to Learn During Invisible Illness Awareness Week

I’m 23, I have a full-time job and bought my first home earlier this year. I’m your regular 20-something who enjoys shopping, going out, traveling and just generally making the most of life.

Are you surprised to learn I have a chronic illness?

Just by looking at me, you wouldn’t know that I have a chronic illness. I have hypothyroidism, due to also having an autoimmune disease called Hashimoto’s thyroiditis. This basically means my immune system has become confused and turned against the body’s own tissues, attacking the thyroid gland, an organ located in the front of the neck. My body is literally attacking itself!

Yikes!

This has resulted in me being on daily thyroid hormone replacement medication, to replace the hormones my thyroid is failing to produce, because it has been destroyed so badly. I’m also gluten-free and have implemented other lifestyle changes to try and calm down the attack on my thyroid by Hashimoto’s, to slow down the development of my hypothyroidism and destruction of more thyroid tissue.

I also have another health condition, called adrenal fatigue. Adrenal fatigue isn’t widely accepted by the medical world as a “real” condition, which is pretty insulting to those of us who have it and struggle with it daily. We tend to not feel “believed.” My cortisol output it chronically high, although I do not have Cushing’s syndrome, so medical professionals tend to refuse to accept that it can cause me any issues. This black and white approach means that they miss the people like me, who are producing an abnormally high amount of cortisol over a prolonged period of time, leading on to increased fatigue and knock-on effects with other aspects of the body, such as sex hormone imbalances, in my case. Adrenal dysfunction and thyroid disease are closely linked as they’re both part of the endocrine system.

The symptoms I often experience due to these health conditions include: fatigue, muscle weakness, difficulty sleeping, sensitivity to cold, aches and pains, brain fog and skin problems, but before I had them under better control, I had over 20 other symptoms, including: depression, acid reflux, weight gain, dry skin, a hoarse voice, migraines and a constantly itchy and sore scalp.

Perhaps this photo will help show it a little better:

I was very ill here. The deep bags under my eyes, the massively thinning eyebrows, the purple-ness and dull look to my skin and the dull look to my eyes, show this. I was physically and mentally drained, in a lot of pain and undiagnosed of any medical problems.

I have come a long way in getting myself better and changing my dismal quality of life back to a good one. It’s been so, so hard. No one understands exactly what I have gone through and continue to go through; the battles, struggles and frustrating brick walls I often hit.

But even now, even though I’m doing much better, I still have bad days or bad mornings, and you can’t tell just by looking at me, that I have a chronic illness and other health problems that I battle daily. Even if I have a good day, my 100% isn’t your 100%.

And I still have some way to go.

Why am I sharing this? Because Invisible Illness Awareness Week begins on September 26, 2016, and we, those with invisible illnesses, deserve to be heard. We deserve to be seen. Lisa Copen founded Rest Ministries in 1996 after being diagnosed with rheumatoid arthritis. She established Invisible Illness Awareness Week in 2002. Many health conditions and illnesses are described as being “invisible” because the effects and symptoms are usually not obvious to most people. Invisible illnesses can include but are by no means limited to: thyroid disease, depression, anxiety, asthma, autism, brain injuries, diabetes, coeliac disease, Crohn’s disease, epilepsy, fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis.

I don’t think any of us with invisible illnesses want to be defined by them, but we would often like a nod of recognition that people understand we may need to take the lift instead of the stairs, we may need a seat on public transport, we may follow specific diets, such as being gluten free, and we may have bad days where we need extra support. We would like our invisible illness to be treated with more respect and acknowledgement.

I’m not Rachel, that girl with chronic illnesses, who is always at the doctor’s. I’m Rachel, the total foodie, who loves fangirling over bands and TV shows, planning social events, going to theme parks, reading, shopping, feeling fancy in vintage style dresses and dancing like a badass after a couple of drinks. Yes, my illness is invisible, but it’s not any less important and you can’t presume it is any less impacting on my life, than many visible illnesses. I function like any other person my age most of the time, but many other people with invisible illnesses unfortunately cannot, and it’s time more of the population were aware of that.

Events like Invisible Illness Awareness Week are a way for us to speak out and start conversations with those around us, about invisible illnesses and how they affect us. They are a way for us to join forces, unite and feel a part of something stronger; a group of many people worldwide who know just what we go through.

Take a minute to learn about some of the many invisible illnesses around, this awareness week and how they affect those who live with them. They may be invisible, but we deserve to be seen.

Follow this journey on The Invisible Hypothyroidism.