What is chronic illness story
This might be a long story, so in advance, I’m sorry.
From the age of 7 I suffered with what was diagnosed as acid reflux, despite it not fitting the symptoms or description. I was prescribed medications that gave me more side effects than it did help. Resorted to going to a second doctor who gave me a prescription for gaviscon as well.
When I was 9 the chronic pain began. It started in my back, but my mum assumed it was just growing pains and ignored it. Then it spread to my hips, so she took me to the doctor. Doctor told me it was just growing pains… Doctor was wrong. My kidneys were failing requiring dialysis. It took years before they found out why, they didn’t give me a firm diagnosis for another 8 years. Today I’m on the transplant list for a new kidney, however I haven’t yet found a donor.
When i was 11 the shortness of breath began. The doctor didn’t even see me, just looked at my age and had me describe over the phone how frequently it happened. He diagnosed me as asthmatic. He was wrong. About a month after he gave me the diagnosis, and the medication having done nothing, the SOB got worse. It would happen whatever i was doing, completely random. The chest pains started not long after, along with tachycardia and dizziness. Once the chest pains got so severe that I couldn’t move, bear in mind I was 10 and my pain threshold has always been incredibly high, I went to the A&E. When I got there they told me that I was wrong, my chest pains didn’t exist and I was too young to have any problem with my heart or lungs. They treated me as if I suffered from munchausens, and when we denied that, suggested munchausens by proxy. So now, not only are they accusing a ten year old child of lying about chest pains for attention, they’re accusing her mother of abuse. For the record, my mother is a lovely woman, we may not always get on but I love her, and she would never hurt me. They tried to send me home, got as far as the car park (halfway to the car) before I collapsed. My heart had stopped beating. They immediately retracted their statements and had me admitted to hospital after resuscitating (if that’s the right word) me. Never have I seen A&E staff so apologetic.
I recovered from that, no surgery, and was sent home. They again weren’t sure why it had happened, but sent me for further tests, some showed abnormal results however there still was no clear cause shown. By the time I was 13 I had asked for an ANA blood test many times, each time being refused. I should mention, there is a family history of seronegative arthritis, psoriatic arthritis, rheumatoid arthritis, psoriasis, ehlers danlos and sarcoidosis, so we weren’t short of medical knowledge.
I switched GP when I was 15 to someone who listened to me, I still see him now. He’s one of the only doctors who has always taken into account what I’ve said, and accepts that I know my body. He was the only one who pushed everyone to help me get a diagnosis. He did the blood tests, unsurprisingly the ANA came back positive.
It took until I was 17 for a diagnosis of lupus (SLE) with multiple system involvement. My body had been so damaged from it there was no way to recover properly. I have been given the treatment now, however many years too late. If I had been treated earlier, my GP has told me many times now, it may not have been terminal.
My story may be depressing, but it’s all too true for many people with chronic illnesses. I have lupus, POTS, fibromyalgia and bone cancer, and yes, it’s gonna kill me.
0 Comments