The Connections I'm Searching for as Someone With a Chronic Illness
I have been severely, chronically and most frighteningly, very critically ill, all my life.
Throughout most of it, I was undiagnosed and I didn’t know why I kept getting worse. I also couldn’t understand why I had a very different life to anyone I’d ever met, or why I wasn’t getting better on any medicine.
More importantly, I couldn’t understand why things happened like the time I got pneumonia which stopped all my organs, I got sepsis, was declared dead and in a coma for two weeks. Or why I spent so much time in an ER begging (with my loved ones) to take me seriously because I’m not a normal case and will die if I don’t get urgent help.
You get the idea. Permanent chaos, a disruption of normal life, terror and trauma for me and anyone who loved me, with no idea why.
For 29 years, not a single doctor thought to look at whether my immune system was working well. They were content with just treating each infection or condition symptomatically and mainly with tons of antibiotics and steroids. The medical community dropped the ball thousands of times.
But then there was a day, just before turning 30, where one professor listened to me. I mean like really listened to me. He was even making eye contact and I could see he didn’t think I was making this up, making it sound worse or a normal case. He is the only healthcare professional over 30 years of going from specialist to specialist in different provinces who said, “I think I know what’s wrong. I think you have an immunodeficiency and we will definitely find out what it is.” I was at a point of not caring how severe or life threatening the diagnosis could be, I just needed a name for this thing that’s trying really hard to kill me so I could fight it with everything I had.
I finally got it. Common variable immunodeficiency. It was a tough diagnosis but I have only felt relieved ever since. Through the help of some other angels who came in the form of doctors and friends, I managed to get my hands on intravenous antibody treatment. There is no cure, but this is a way of giving patients like me (who have a broken immune system), some quality of life back. Physically, things have been a bit better on antibody replacement therapy but I have many other (related and unrelated) chronic illnesses so the daily grind is tough.
But, the joy I have in my life is so much bigger than I can explain. I think when one is faced with mortality the whole time, you really understand the fragility of life and you really value absolutely anything that works to your advantage, or actually just works out pretty normally, or just kind of works. Make no mistake, it also gives you things like anxiety and obsessive thoughts about death and suffering and germs, but mainly I have been blessed to experience so much joy, despite (and maybe because of) my condition.
I have days where I only cry, but I have always bounced back with even more joy in my heart. Now I can look back and see that despite this monstrous illness that keeps trying to snuff out my last breath, I also managed to have a perfect, witty and beautiful baby girl. I’m not able to hold down a job, but I am able to spend my days with her at home and hold her. My family is my life and I hope they all know it. And I know that family and friends are worth more than anything else on earth. I have faith because I have witnessed miracles, due to my condition. I am deeply happy, even on the bad days… but it was a long journey.
The reason why I came across The Mighty and why I want to share my story is that in struggling with chronic illness, I have met even braver souls, fighting harder than I and losing far more, but we all have something in common: many of us feel essentially, deeply isolated and we feel scared. Every person with chronic illness I have chatted to wants… more. They want to connect more with others like them. They want to learn more about their condition. They want more understanding. They want others to feel empathy, not just pity or sympathy. They want and need a counselor, a listener and someone who really gets it. In a digital age, where we have so much knowledge, fabulous diagnostic methods, cures, research, the internet and smartphones that can change our worlds from our beds, we often come up empty-handed.
I live in South Africa. When I Google something like “chronic illness counselor,” the first hit I can find is in San Francisco. How is this possible?
Surely, the way to combat our issue for more is to do what this beautiful platform is doing:
1. Find others with the same condition because no one understands like they do,
2. Get help for when you’re emotionally struggling with your disease (which can be more frightening than the disease itself) and to…
3. get as much information as possible so that you can look after yourself and help others look after you.
I am on a mission to find connectedness, life hacks, tools, coping mechanisms, humor and knowledge about dealing with chronic illness and as I find things, I’ll share them here with you so that we can fight this thing as a herd and not as a single lonely soul. We will find more and we’ll be more than conquerers.
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Thinkstock photo by Hemera Technologies