“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.” — Glenn Schweitzer
As someone who’s battled chronic and invisible illness for quite a few years, I’m often torn with what I can say to be heard and seen without feeling like I’m relying on people and being a burden, but also to share the realities and struggles of chronic illness.
In addition to having my symptoms and effects of my chronic illnesses on my shoulders, I also have the normal everyday anxieties, struggles and battles that every person deals with, and some days it’s a bit too much, some days I just want to be held.
I truly believe that people who survive chronic illnesses and diseases and conditions that require you to fight hard in order to live your everyday life make you stronger and more resilient than most.
Chronic and invisible illnesses are so complicated and can be so isolating. Before my diagnoses and even still now I often cancel plans or bail last minute, I have been considered the flaky friend and often don’t have the energy to explain myself or what is going on.
People thought I was faking it for attention, others thought I must be exaggerating. I did lose some friendships and others drifted apart as a result.
But the reality was and still often is I am fighting daily to live. I am in pain. I am exhausted. I often feel emotionally broken from the turmoil of it all. I am scared at what my future would look like if this continued. I am tired of being sick and tired and fighting my body daily let alone the opinions of people around me.
In 2018 after nearly 14 years of pain, sickness and exhaustion topped with many other symptoms I was finally diagnosed with two incurable illnesses; Endometriosis and Polycystic Ovarian Syndrome. An answer; yes, but also no cure either!
Endometriosis not only has no cure but a never-ending list of symptoms and related conditions. So far in my journey I’ve experienced the severe pain requiring opiates for relief, fatigue, nausea, pain and urgency with using the bathroom, and so much more.
Many people with endometriosis are misdiagnosed and I can attest to that as I was on many occasions, they can be deemed drug seekers when they turn up to emergency rooms in agony looking for relief and help and they can be dismissed and told that it’s just a bad period when it’s so much more.
As you can imagine this often leads to anxiety, depression and medical PTSD, it’s a very difficult place to find yourself when you cannot access help and your pain is beyond your control and ability to manage.
Fighting the battle alone…
As a single chronic illness warrior, I’ve often felt like a burden to those I’ve reached out to for help and support when I just can’t manage to do something myself.
My house is often neglected because I’m in too much pain and I know if I try to do something like vacuuming when I’m already in pain then I’ll set myself back a few days. There are days when I feel extremely isolated, having been too unwell to leave the house but needing some socialization and my friends just don’t reply or are too busy.
There are the days following my surgeries where I was housebound and wished people would have stopped by to just say hi, but instead for six weeks I was home without visitors feeling extremely lonely.
There’s the 3am’s when I’m in agony but feel bad for wanting to call an ambulance in case someone was in more need than me, but I didn’t have anyone to take me to ED. There’s the guilt for the cancelling plans, the calling in sick to work and for often not being a present friend because I’m just trying to survive.
God’s word in the battle…
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah chapter 29, verse 11)
God’s word so clearly says his plans are to prosper us and not to harm us, most of us would then ask why God allows us to be sick and to have to battle these illnesses, but as I said earlier I believe they make us stronger and more resilient and I truly believe that despite all the negative they make us stronger and more capable and they shape us into the warriors we are today.
Three things I wish someone told me earlier…
- You are not alone even when you feel so lonely and isolated. God walks beside you in life for you to lean on him. There’s more people like you in this world too though, find the online or local communities for people who walk similar battles as you.
- Resilience and strength doesn’t come overnight, it comes as you fight and learn to find your inner strength and who you are.
- It’s okay to cry, to scream, to admit defeat, to ask for help and to admit you aren’t okay. What matters is that you wipe away the tears and get back up to fight, to fight the demons, the doctors who think they know your body better than you and to keep advocating for yourself.
I am a Young Salvationist who lives in Upper Hutt, Wellington. I am passionate about enhancing the life experiences of others and do this in my paid employment as a Support worker for those with Intellectual Disabilities and as a volunteer leader for GirlGuiding New Zealand. I love to create, write and travel the world and have a passion for submerging myself in the cultures of each place I travel. I left my heart in Africa a month before Covid sent the world into lockdown and I cannot wait to be able to return and serve in a continent that stole so much of my heart.