“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.”
Coming to terms with a chronic disease is extremely hard. Knowing that there isn’t a cure, that they don’t know why the disease happens, knowing that all of your health lies in the hands of your disease. It affects your life in so many ways. After almost 9 years of knowing deep down that something was wrong, living with debilitating pain and feeling constantly tired, I was diagnosed with endometriosis. This post is going to be about my psychological journey with this disease, I do have other posts on the topic which I’ll include down the bottom of the post.
It’s all in your head
Any doctor I saw made me feel like a hypochondriac. They told me it was all in my head, that my body was adjusting to puberty, that I just simply needed a better night sleep and to harden up. I was thrown on pill after pill after pill with no changes. I had some friends tell me I was overreacting, that I was just being lazy and attention seeking.
Every time I had the guts to talk to someone about what was going on I would get shot down in flames. I hadn’t even heard of endometriosis. I knew deep down that something was wrong, I truly did. I believe that if you think intuitively that something is wrong it probably is. No doctor tried to explore what was happening. The closest I got was a blood test which was my first of many exposing my many vitamin deficiencies – related to the endometriosis and chronic bleeding and pain.
I started having other health issues in my later teens, I became sick easily (glandular fever), I started getting an increase in migraines, bone pain, stomach cramps, (I’m so sorry for this next part) and changes in my bowel and bladder excretions. Anyone who knew me in high school knew I left the class a lot to pee, it was bad. In 2014 my dad had to take me to emergency because I had unbearable pain in my stomach and bowel, I was diagnosed with irritable bowel syndrome and told to take medication and I’ll be fine. This should have been taken far more seriously.
In 2015 I ended up seeing a doctor about the stomach pains, it turned out I had food allergies that never existed previously; or that I just never reacted that way previously. No one seemed phased that these food allergies came out of nowhere. One doctor suggested it came from emotional distress from my mental breakdown. It was the endometriosis.
From an early age I knew I might have reproductive health issues due to a strong family history, I sort of thought this effected my thinking so that I automatically assumed there was something wrong.
You’re friends don’t care
That’s not entirely true, I had a couple of friends that believed me that something was wrong. I did have a lot that would … not bully me but sort of pick at me for it? I struggled getting out of bed for school: I was being lazy. I couldn’t concentrate: I didn’t give a shit about my education. I have to pee a lot: don’t drink so much. Extremely tired? Try having a better nights sleep and go to bed much earlier.
I was made to feel useless and again, like a hypochondriac. Everyone tried to tell me that it was all in my head. When I first started at my second high school within the first week I had made some friends. I didn’t bring up what I was unknowingly dealing with I just let it go. I ended up leaking out of my pad and all over the place, one of them suggested that I don’t change my pad enough and I wasn’t being hygienic; this is glossing over the fact I had changed my pad before the class started.
I could sit here and talk shit about all the friends I had that made me feel like shit but I’ll flip it, I did have a couple of friends that were understanding about something I didn’t even understand. They never made me feel like shit, they never questioned my days off school and they never treated me like I was attention seeking.
You poor thing
Was the first thing I heard out of the mouth of my gynaecologist. Before I get there though, here’s when my break through happened.
At the start of 2017 I told my boyfriend that I would go to the doctor one more time and see what was going on, I decided that if I wasn’t taken seriously I would admit defeat and come to terms with being a hypochondriac. (How can you be a hypochondriac with a disease you didn’t know existed?). I started studying nursing and a girl in my mentor group brought up endometriosis, I was curious and asked about it. I fit almost all of the symptoms she listed off, oh boy.
So as I mentioned I went to the doctor and straight away he ordered an ultrasound and blood test. Let me tell you, transvaginal ultrasounds are painful. On the way to the ultrasound appointment I told my boyfriend that nothing would show up and that it was a huge waste of time. I got myself so worked up that it was all in my head that the entire time I was having an ultrasound I just wanted to cry. They found a couple of abnormalities and I became conflicted. Thank god they found something, oh god they found something. I was put on the waiting list for the public hospital, I couldn’t wait that long.
A few months pass and I get no word. I went back to the doctor this time knowing that there was something there and asking to be referred through the private health system, this meant I had to get another ultrasound. They found everything they found before, the same sizes and all. This was both good and bad. Good: because nothing had changed. Bad: because it meant my body couldn’t heal or change it.
I was referred to a gyno who happened to give birth to her child earlier than expected so I was then given to my current gyno. The moment he called my name into the room and said “you poor thing” I cried. I was being taken seriously, there was something wrong and I knew all along.
I again had to get another ultrasound done, this time by my gyno who pointed out what everything was. Endometriosis was everywhere. Within 5 minutes I had booked in for my first surgery for November that year. I was beginning to feel better that I was being taken seriously and that after all this time, something was being done about it.
You’re an unusual case
Is what I heard in my follow up 6 week post surgery meeting. I had grown around 15-20 years worth of growth in 9 years which was abnormal. It was a definite, I was diagnosed with endometriosis. Part of me wished I was a hypochondriac because this now meant that because I know what it is, I now had to learn how it’ll effect my life.
My body being able to grow a lot of growth in a short period of time meant that I would have to be on constant alert and be in tune with my body. My mental health began to suffer again because well, how do you soak in that you have a cureless disease that will change and control your entire health for the rest of your life?
Well, I won’t lie I got depressed again. I began crying all the time and feeling sorry for myself. What did I do so badly to deserve this? I blamed myself completely. I had to go on a very strong pill that didn’t help in my plummeted moods which led me having to start taking mood stabilisers (not a fan of antidepressants but if they work for you that’s great!) to try and find a good emotional place. I started seeing my psychologist every 2 weeks and started to pretty much stick to myself.
It doesn’t stop there, I began to research what I had instead of being afraid of it. Ultimately, I became far more afraid. Knowing that I’m at a much higher risk of developing autoimmune disease, certain cancers and the possibility of infertility. This was hard for me to digest, how do you cope knowing you have a life long disease, combined with these other possibilities? I felt (and still sometimes feel) like a wasted human being, I feel like this may come across as over emotional to someone who hasn’t dealt with endometriosis but I promise you it’s a common feeling.
Stop comparing yourself, idiot
I sort of went into denial about it. I thought how other people have even more serious conditions than me and that I wasn’t that bad but that only made it worse for me psychologically. I’ve learnt that you can’t compare yourself to other diseases because you’ll end up invalidating your own disease, which isn’t good. It’s hard to accept any disease you have. Your health is important. Remember that.
Prescriptions, prescriptions and more prescriptions
Going through multiple medications and treatments take a toll on you mentally. To know that certain treatments don’t do anything for you make you lose the feeling of hope. I’ve tried weak, medium and strong strength pills without success, I’ve tried the implanon to no success, I’m unable to have the mirena, so my last and current treatment trial is the depo shot every 10 weeks. It’s a deflating feeling when you start running out of options for your treatment, the only constant treatment that works for a period of time is surgery …how exciting!
Oh the betrayal
How can your body betray you so much as to develop a chronic disease? To alter your entire health so that you’ll never have a clean bill of health? I hated myself, I still do sometimes. As I mentioned above that I still sometimes blame myself for this despite knowing deep down I couldn’t avoid it. I could, however, avoid the partial organ loss if doctors had of believed me earlier but it is what it is.
So how have I come to terms with this disease you ask?
Well….truth be told….I haven’t. I probably won’t for some time and that’s okay. I’m not overreacting and I’m not being dramatic about it. It’s one of those things that take time without judgement or invalidation. I have to play with the cards I’m dealt with in life and unfortunately I got a shit deck of cards.
I’ve cried, I’ve screamed, I’ve been angry, I’ve been disappointed, I’ve been depressed and I’ve been happy. It’s been a roller coaster ride. As I’ve overcome the hurdle of clinical depression, sever social anxiety and post traumatic stress disorder…then I get this diagnosis. I feel pretty strong but also weak, I’ve made the promise to myself to not let other people make me feel bad about what I’m dealing with. It’s not up to them how I deal with this.
I hate being chronically tired, dealing with chronic pain, and feeling constantly less than a human being.
This has been hard. It will continue to be hard but I’ll be fighting all the way through.
The support I’ve received
Since my diagnosis, and even before it, my family and friends have been incredibly supportive. I feel that it would be so much harder to deal with this without them and their love and support.I’ve had people around me that I can cry to on the hard days and nights. My workplace has been great and accommodating with my condition so I’ve been incredibly lucky.
It’s important to have a great support network when dealing with your health, and in general. Family and friends will always keep you sane and be there for you, if you pick the right people.
If you think something is wrong, it probably is.
I am 1 in 10.