People Who've Been Seriously Ill Talk About the Symptom They Shouldn't Have Ignored

If you think you might be properly getting ill, here's an idea: ask a doctor what they think.

by Ruth Faj
Dec 4 2017, 2:20pm

A stock photo of a guy sneezing. Photo: Andriy Popov / Alamy Stock Photo

Ignore it and it'll go away – the approach many of us take to medical symptoms, nascent ailments and the strange dotty rashes we find all over our extremities. Fairly obviously, this is not a good approach to take. If you think something's wrong, get it checked out – it could be the difference between a speedy recovery and something much worse. Of course, this is one of the reasons lots of use choose to do nothing: denial is easier than acceptance.

"To have to endure the symptoms [while also not knowing what illness] they may have definitely can come under 'ignorance is bliss'," explains Dr Julie Scheiner, a psychologist who specialises in behavioural therapy. "People are frightened of the things they don't understand, so ignoring symptoms may be easier to deal with than potentially having to grieve for something that may be worse to come. It’s a defence mechanism."

I spoke to four people who did exactly that, before being diagnosed with serious illnesses.

Christine Coppa, Research Editor, Thyroid Cancer

I had a few symptoms, if I'm being honest with you, but it was when my voice became hoarse in the spring of 2014 – and the accompanying cough – that I took a bit more notice. There wasn’t actually any pain with either, so I put it down to allergies, the seasonal type. I was always at the little league field with my son, or at the park, because Jack is one active kid. I truly did believe it was because of the environmental elements that I was coming down with something.

Initially it was the shock that took the wind out of me, when my doctor told me she felt a lump in my neck. And then, after all the tests, the prodding and X-rays, when I heard the C-word it felt surreal, like it wasn’t reality. How could it be? Everything happened so fast I didn’t have time to process it – but as always, my son was on my mind. I felt guilty about being away from my five-year-old boy. But thanks to my family, who were so supportive, Jack was well taken care of as I went full steam ahead with my treatment plan.

The grieving came after my first round of radiation, when I was taking Synthroid, a drug I’ll have to take for the rest of my life. I grieved for my old life. The life I was accustomed to. And then I was flooded with anger. Angry that my weight was fluctuating, that I was always tired; one minute I was hot, and the next cold. That my moods were high and then low – and that this was affecting those closest to me. Thyroid cancer is not fun. And it's not OK that it's branded the best cancer to get, or "good cancer". My entire life changed.

I didn't go to my doctor because I was ill; I went for my yearly physical. If I'd gone in when the hoarseness and cough persisted, the tumour wouldn't have grown to over centimetres. It covered the entire right side of my thyroid gland. I feel like if it was caught earlier, at least half of my thyroid could have been spared and maybe I wouldn't have needed radiation treatment or be left with a lifetime of meds. You can't think about 'what if', though; I'm just so thankful I’m alive.

My advice: just go to the doctor. I also encourage women to check their necks routinely. If I had, I would have most certainly felt the lump. It felt like a hard purple grape. If I'd looked in the mirror when I was talking or swallowing I would have seen the bulge in my neck moving – but who does that?

Nicole Greene, Deputy Director for the US Office on Women's Health (OWH), Lyme disease

I remember it was the Easter Sunday morning of 2007. I woke up and I couldn't move. Nothing would shift from the neck down. What might sound strange is that I wasn’t scared at the time – I just thought I was getting the flu. I'd slowly been getting more sickly, but I didn’t think it was anything as serious as it actually was. Finally, I went to see my doctor. I got tested for lupus, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, sickle cell disease and other things. All were negative, bar the test for Lyme disease. I’d never even heard of the illness. I told myself and my doctor that there was no way I had it. "I'm not an outdoor person," I said. The initial denial was potent, until I remembered how, six years prior, a friend of mine had pulled a tick out of my head and flushed it down the toilet. I didn’t even see the thing – that’s how inconsequential it was at the time.

Lyme disease is a bacterial infection. It develops from the bite of an infected tick. More serious symptoms can develop several weeks, months or even years later if Lyme disease isn’t caught early, and that’s what happened with me. Symptoms such as severe headaches, arthritis and severe joint pain, dizziness, nerve pain and memory issues are just a few the ones sufferers can face. After my diagnosis I felt empty and was told I had depression. It made sense – the world was grey in my eyes.

I was immediately placed on antibiotics. The meds depleted my energy; some days I couldn’t make it to work. Errands left me so fatigued. For nearly a year I missed out on so much. Time with family and friends, birthdays, celebrations and saying goodbye to those who passed away. That year was hell. It was when, however, I was trying for my second child that I discovered Lyme disease can affect fertility. I had two ectopic pregnancies along the way. It’s with the help of my support system that I have pushed through. I’ve had to drastically change my diet and my energy levels are not what they once were, but when I feel good, I feel good.

I know there are people out there who are suffering and don't know why. If you know something's not right, don't give up. Research, research, research, and then go and see your doctor. Get a second opinion if you must, or a third. Don't let you pain and anguish be dismissed. I know it’s hard to keep being optimistic – trust me, I’ve been there – but please try. And it’s critical you have a strong network, whether it be family and friends or support groups.

WATCH: The Experimental Ketamine Cure for Depression

Max Tuck, author of 'Fatigue Solution', chronic fatigue syndrome and Epstein Barr virus

'Why oh why did I ignore my grinding exhaustion?' I used to ask myself often. That’s what you do when you get diagnosed with an illness that alters life as you know it. For me, it was because I was busy. Busy running the rat race. There wasn’t time to be tired. So I kept going, even though my body was saying otherwise.

When my doctor finally told me that I had chronic fatigue syndrome and Epstein Barr virus, I decided I wasn’t going to bury my head in the sand – I was going to fight it head on. I pushed the initial fear and shock that engulfed my body away and I threw myself into getting better. In my case, it's hard to say whether or not, if I went to get checked out earlier, the prognosis would’ve been different, because it took a while for my muscle wastage to become apparent and for the changes occurring in my white blood cell count to appear. But if I did find out sooner, about the EBV, I would have thrown myself into working on improving my immune system. I'm just grateful I found out when I did.

The Epstein Barr virus kills: glandular fever and several types of cancers have been linked with it. I was told the virus was incurable. Hearing that felt like a knife to the chest. As I sat down in the doctor’s office and those life-changing words, "Unfortunately you have very few white blood cells remaining and you need to realise that most people never fully recover from this," left his lips, my head went into a spin. I’d heard of the increasing debility experienced by people diagnosed with the condition; many of whom end up in a wheelchair. But that wasn’t going to be me, I promised myself.

If you have a symptom – any symptom – get it checked out. And do so quickly. Time is of the essence. But never believe that nothing can be done about it, even if the doctor tells you that. The body is an incredible machine.

Charis, Endometriosis

Endometriosis is when cells, like the ones in the uterus, are found in other parts of the body. Every month these cells act in the same way as the ones in the womb do – building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, the blood has nowhere to go. Not everyone experiences chronic pain or infertility, though – from what I've read, anyway.

I had the worst period pains. It seems pretty obvious that I should have gone to get checked out, right? But I just thought it was normal – a normal, painful part of womanhood. Thing is, I never experienced period pains in my teens, but I just chalked it down to life, you know? However, every month, the pains got stronger and longer. They were so debilitating that I started to take a lot of time off work. It took about three years of pestering my doctors to perform a diagnostic laparoscopy.

I know they say to never check your symptoms on the internet, but I did my own research anyway and concluded I had endometriosis. I was right. Deep down, we know our bodies, we know when something is wrong. Three years of badgering seems like a very long time, but on average women [in the UK] can wait seven to eight years. I went through all the stages of grieving. There was denial, the anger – everything. I've basically lost my old life. The last couple years have been hell for me, but I'm just trying to accept it now and focus on feeling better.

An earlier diagnosis may have helped, but as great as the NHS is, I don’t think I would’ve been referred for the laparoscopy until my symptoms had worsened anyway. With endo, the longer it’s left undiagnosed, the higher the risk of infertility and the worse the pain is. Had the prognosis been any later, my ovaries could have been seriously damaged, as could any other parts of the body where the tissue was behaving abnormally and growing.

Guys, no matter how mundane the symptom, get it seen to and pester your GP. If you really think something is wrong, don't let them dismiss your symptoms. If they do, make appointments to see the other GPs in the surgery. It's time consuming and very frustrating, but it needs to be done. Your health – your life – is important.


Lyme Disease
chronic fatigue syndrome
epsetin barr virus