Invisible Illness is defined as medical conditions that are hidden.
Every year women are diagnosed with medical conditions that are hidden from the world. Unfortunately they also sometimes feel the need to hide the fact that they are sick. I want to open the box and bring these conditions to light and let women express themselves and bring awareness to their medical conditions. In this series, we will interview women who want to share their stories and invisible illnesses with you.
1. What is your invisible illness?
I have Premenstrual Dysphoric Disorder or PMDD for short. It is a severe form of PMS which for me includes debilitating shifts in mood as well as a variety of physical pain that is linked to my menstrual cycle.
2. How has it affected your life?
Between physical and emotion disturbances I feel like I suffer for most of my cycle. I might get 1 good week each month where I do not experience pain or crippling depression and then the build up into the extreme PMS starts all over again. It results in me feeling completely exhausted all the time and I must really push through that foggy barrier each day to get anything done. As a result, I often feel frustrated, annoyed, overwhelmed and sometimes quite desperate for any type of relief. Being an actor having boundless energy and focus is so important and so dealing with these factors only adds another dimension to the work I must put into an already very demanding industry.
3. What were the first signs you knew something could be wrong?
I always thought there was a pattern with the decrease in my mood and the discomfort I would feel in my body. I suffered severe cramps and mood swings right from the onset of getting my period at 13 years of age. However more recently I felt a huge shift in my body the year I turned 30. Even though I had always suffered with my PMS symptoms, that year, the symptoms became amplified and quite unbearable. It was frightening and so I started going to the doctor to search for answers. I felt like my body and mind were betraying me and that there had to be an answer to what was happening.
4. Things that people say to you about your illness that annoys you?
I think it can get a little overwhelming and frankly isolating when people try to diagnose you with something different or offer simple solutions to an overly complex illness. From ‘you should just go on the pill’ to ‘maybe you should have a baby’ as well as ‘have you tried therapy?’ it really does make me feel unheard and unsupported. I’ve tried many different suggestions from the professionals but unfortunately, it really is a trial-and-error type scenario. There are also some people who straight up do not believe that PMDD exists. It is a relatively new term and research into it is still so fresh as doctors try to figure out the best treatments. We all know how complex the human body is. Add hormone issues to that and it becomes an endless maze of lots of questions with very few answers. Additionally, what may work for one woman may not necessarily work for the next woman. Every human body is different and so different approaches may be needed.
5. When you were diagnosed what was your first reaction?
After over a year of seeing doctors, when I was finally diagnosed, I felt a huge wave of relief. Knowing that there was an explanation for what I was experiencing, that it was not just in my head and that doctors were finally listening and taking me seriously, this was a big deal to my mental health. And having a starting point to embark on further research helped me learn that I wasn’t alone. There are so many women who struggle with PMDD and quite often they can go undiagnosed for many years.
6. How do you explain your illness to people?
I usually start with ‘PMDD is like PMS on steroids.’ It can feel like my body is allergic to its own hormones. Each month I experience deep sadness, anger and full-blown depression as well as extreme fatigue, inflammation and pain in all my joints, migraines, awful lower back pain and overall muscle weakness and discomfort. It usually builds up in intensity over the week leading into my period and reaches a peak where I have had suicidal thoughts and then it tends to subside on the first day of my period. It means that I actually look forward to my period starting so I can feel some relief from these overwhelming symptoms.
7. What is something you wish people knew?
I guess it’s that idea of you never know what someone may be dealing with on a day-to-day basis so be kind. Most days I feel some type of pain, anxiety or depression and I still need to go to work, auditions and try my best to achieve my goals. I’m not alone. There are so many who struggle with these invisible illnesses every day and put on a brave face to take on the outside world. Also doctors get it wrong. They are human and make mistakes too. So, if you are searching for answers about your health concerns and you’re being met with silence or answers that don’t feel right to you, find another doctor. Trust your instincts because they’re usually right. No one knows your body better than you do.
8. Have you found anything that improves your illness?
At this point in time nothing has eliminated my symptoms. However, I have found methods that can greatly reduce some symptoms if I stick to my routine. It’s cliché I know but diet and exercise really do help. I’m currently doing a lot of Buti Yoga, which is yoga flow mixed with tribal dance. It helps me build strength which in turn helps my back pain, it helps with the inflammation and joint pain and the natural endorphins is a natural mood booster. Anything that gets the blood flowing and that you can enjoy so you stick to a regular practise will be beneficial. I am prescribed an antidepressant and that has helped with day-to-day anxiety and the suicidal tendencies I can have at the climax of my PMDD. I also have regular acupuncture and take Chinese herbs that are discussed with a professional acupuncturist. I find this practise really helpful with my physical pain and combined with a good diet it improves my moods too. I do have to stick to it all though. As soon as I let things slide my body screams at me.
9. Tell us about a bad day.
A bad day with PMDD can be met with awful depression and I can feel like I’m getting the flu. There might be uncontrollable crying all day, thoughts of suicide and all-round hopelessness. My whole body will feel swollen wand joined with muscle aches, headaches and fatigue so heavy it feels impossible to move. Sometimes the pain in my fingers will be so severe I struggle to even hold a cup. Sometimes all I can do is sleep and hope that the next day will be better.
10. Tell us about a good day.
On a good day I begin by releasing a big sigh of relief. I will have little to no pain in my body and my moods will feel elevated. Ideas flow, creativity comes more naturally and I’ll be eager to go out and about and simply enjoy life. I laugh harder, smile broader and start to feel hopeful again. Even though I try hard to push through the bad days and still get my creative projects completed, on the good days it makes these gigs more of a celebration.
All responses are in Whitney’s own words. Nothing has been modified or changed. Here at The Hayley Daily we want to hear (or view) women’s voices.
1. What is your invisible illness?
Hypothyroidism and the associated Chronic Fatigue. There are different types of hypothyroidism and mine is caused by having my thyroid removed as treatment for thyroid cancer. About 2.5 years before that was diagnosed, I was diagnosed with Chronic Fatigue Syndrome, but once my thyroid was properly treated that has improved significantly.
2. How has it affected your life?
It’s affected my life hugely. I have to take medication every day and get regular blood tests to monitor medication levels, but after 11 years that is just par for the course now. At the beginning that in and of itself was a big mental adjustment and it took a couple of years for my hormone levels to stabilise with medication. There was a bit of grief involved in thinking that as a young woman (23 years old) I needed to take medicine to survive, and would need it forever. Plus, I get anxiety and a strong vasovagal response to needles so having to get regular blood tests took some adjusting to as well. Thankfully now those things have become my new normal and I have strategies to cope, but it took time.
The main impact has been the physical and mental symptoms that I experience when my hormone/medication levels are out of whack. There have been a couple of times, especially in the first 3 years after the thyroidectomy, where that was the case and it was quite debilitating. I also didn’t have a regular doctor, didn’t understand my condition very well and was in the early stages of my teaching career so that made it even harder. My invisible illnesses (I also have endometriosis) are the reason I ended up leaving my teaching career, so it’s had a huge impact on my life.
The main symptoms that I find most challenging on an ongoing basis is the fatigue, brain fog and the post-exertional malaise (PEM) that I experience when I ‘over do it’. I experience some degree of this all the time (although it’s definitely better since I’ve changed career and can look after myself more!) but it gets a lot worse if my medication isn’t managed well or if I push past my limits.
There are other physical symptoms of thyroid hormones/medication being too high or low, such as intolerance to heat or being cold all the time, depression and anxiety, heart palpitations and weight gain/loss. These are all things I now understand and know to look out for, but in the early days of my illness I didn’t know that these meant I needed to get a checkup and get things back on track. Instead I suffered and my symptoms got worse and worse. Now I am more educated about that and I have a great GP who manages my medication really well, so I haven’t had things get too out of hand in many years, thankfully.
The other way my invisible illnesses have impacted my life is that they’ve led me on a huge journey of self-education, self-care and self-advocacy. When I first became unwell, I experienced what I now know to be medical gaslighting (where the medical professional doesn’t believe the patient’s account of symptoms and therefore doesn’t appropriately diagnose or treat the illness). I also was very naive about my body, my illnesses and the medical system in general. Plus, I was a young person, naive about life in general. I didn’t know what I didn’t know, and unfortunately I had some poor care initially from GPs, which not only delayed diagnosis and treatment, but also led me to doubt my own experience. I didn’t feel confident getting a second opinion (or third or fourth!), and I didn’t know I could advocate for myself. I’ve learned SO much since then, both about my body and illnesses, and the medical system, so now I am a much more educated, equipped and empowered patient.
3.What were the first signs you knew something could be wrong?
This one is hard to say. I got Glandular Fever, as so many young people do, and just didn’t really get better, which led to the diagnosis of Chronic Fatigue Syndrome. But then 2.5 years later, I was reading a magazine about a person with thyroid cancer who talked about having a lump in the front of their throat. I realised I had a similar lump, and at my next doctor’s appointment I mentioned it. Luckily, I couldn’t get into the usual GP so I saw somebody new, who took me seriously from the get go, and that led to the diagnosis and treatment of thyroid cancer. So my advice is if you have any unusual lumps in your throat, get them checked!
4. Things that people say to you about your illness that annoys you?
“Everybody is tired, that’s the modern world” is one that annoys me. I mean, it’s true, the modern world takes its toll on everyone, but there is a big difference between that and ongoing chronic fatigue and especially between general tiredness and post-exertional malaise!
People also commonly associate hypothyroidism with weight gain, which is a symptom, but I find it an unhelpful fixation when in my opinion there are so many other symptoms that are more dangerous and more debilitating. It stems from diet culture and our society’s obsession with size and I don’t think it’s useful to anyone to focus on it. In some cases it can even be dangerous if it triggers disordered eating or other unhealthy behaviours.
There is also a common reference to thyroid cancer being “the good cancer” which is an awful, awful thing to hear when you’re coming to terms with a cancer diagnosis. All cancer diagnoses are absolutely terrifying, and although thyroid cancer is usually non-aggressive and with a positive prognosis (which is what they mean by ‘good’) that isn’t always the case. Some rare forms are definitely not ‘good’ so it’s not always an accurate thing to say. Now that I’m many years on from my own diagnosis, this comment doesn’t trigger me so much, but never ever say it to somebody in the midst of diagnosis and treatment!!!
5. When you were diagnosed what was your first reaction?
When I was first diagnosed with Chronic Fatigue Syndrome, most of my reactions were around feeling guilty (as if it was my fault) and like I was crazy or making it up for attention. These I now know are common reactions to invisible illnesses and in my case were the result of medical gaslighting.
When I was first diagnosed with thyroid cancer my reaction was terror, as most people’s would be I think. But I also had a sense of being vindicated, that there was actually something wrong with me and it wasn’t all in my head. I want to point out clearly that CFS is not all in somebody’s head either, but at the time getting a cancer diagnosis suddenly made doctors and others take me seriously.
When I was first diagnosed or more accurately when it was first explained to me that after treatment for thyroid cancer I would be permanently hypothyroid and have to take medication for the rest of my life, I felt grief around that. I also didn’t truly understand what that meant so in hindsight I didn’t have a lot of other reactions because I didn’t fully comprehend the ramifications of missing such a vital body part. Plus, I was just so relieved the cancer was all taken care of!
6. How do you explain your illness to people?
I usually just explain that I don’t have a thyroid anymore because I had thyroid cancer, and that it causes me a lot of fatigue. I often say that although I look fine, I’m not as physically robust as most people and have to pace myself carefully so as not to overdo it. I also often explain ‘spoon theory’ and say I don’t have as many ‘spoons’ (units of energy) as others.
7. What is something you wish people knew?
I wish people in general knew more about invisible illnesses, chronic conditions and disabilities. For those of us who experience them, they take up a huge amount of our time, energy and attention always. There are no days off.
For me, there is a constant calculation going on in my head at all times working out how much energy even basic daily activities and work commitments will require and how much (if any) I’ll have left at the end of it. This is all invisible and largely automatic even for me, but I wish other people understood that.
8. Have you found anything that improves your illness?
The three most powerful things for me have been really learning a lot about my condition so that I’m an empowered and educated patient, having a great GP who listens to me and treats me as an equal partner in my own care, and changing careers to one that allows a lot more flexibility and opportunity to work with (instead of against) my body.
9. Tell us about a bad day.
Other than the day I got the cancer news, the worst days for me were in the early years of my hypothyroidism when I didn’t understand what symptoms to look out for and my hormones got so out of whack that I felt completely exhausted, unwell, miserable and very confused by what was happening in my body.
These days, a bad day is usually the day after I’ve pushed myself way too far and I’m experiencing post-exertional malaise. I feel just totally rotten all over, usually pretty miserable, sometimes angry at myself for overdoing it, and completely and utterly physically and mentally exhausted. I can’t work because I can’t concentrate, and I just have to rest. Even getting off the couch to walk to the bathroom feels like too much effort and I just feel totally empty. Nowadays I at least know that this too shall pass and I try to give myself self-compassion in the midst of those bad days.
10. Tell us about a good day.
On a good day I wake up feeling reasonably refreshed, with no brain fog and minimal fatigue. I can do all my usual daily activities and get a decent amount of work done easily. I still have energy left for some exercise and socialising too, without feeling like I’m pushing beyond my limits and will have to ‘pay for it’ the next day. I will also feel positive and proactive, and have a sense of general wellbeing.
All responses are in Ellen’s own words. Nothing has been modified or changed. Here at The Hayley Daily we want to hear (or view) women’s voices.
Want to Share Your Story?
Do you have a condition or story that you want to share? We would love to help. Email thehayleydaily@gmail.com with the subject Share My Story and we will be in touch.
