When’s the last time you were really honest with your doctors? Never? That used to be me.
Anyone with any type of chronic pain knows that there are better days, bad days, and the worst days. If you battle chronic pain, I’m also betting you minimise it to those around you. You put on a brave face and don’t reach out for medical support anywhere near as often as you should.
I’m very much the same. I rarely reach out to my team of medical professionals unless I really, really need to. This is partly because of numerous negative experiences in the past and partly because I don’t want to be a bother. However, a month ago I went from feeling as well as I ever will be, my version of normal, to feeling worryingly unwell in just a matter of hours.
A Flare-Up Like No Other
Not a lot scares me when it comes to my health. To my husband’s frustration, I continue to minimise even the severe symptoms and won’t admit when it’s getting to be more than I can handle. However, on this day I was genuinely scared by this sudden onset of pain in my ankles (later spreading to other joints). This, and the other symptoms that I had, felt like no other flare up I’d ever experienced. So I reached out to my GP, but failed to get past a particularly obstructive receptionist. I didn’t have the energy for a battle, so I accepted her dismissal and ended the phone call.
Several hours later I had grown much worse, so I called back for an emergency appointment. I was refused this, so I asked for a GP to ring me back. After several requests, I was granted this. To cut a long story short, my GP was unhelpful at best and entirely dismissive at worst, which was surprising as she had always been one of the better ones. I was refused stronger pain medication and told to wait until morning for a blood test.
A short time later I had become utterly consumed by the pain and was genuinely becoming very concerned. I called an out of hours service who wanted me seen immediately, given that I have a disease which means my immune system isn’t working. I’m also on a lot of complex medications which can cause issues of their own (as well as suppress my immune system). It turned out theirs was the right call. I ended up in hospital for a week while the doctors tried to get my pain back under control and work out what on earth had happened to cause such a rapid decline in my health.
Never Was A Story Of More Woe?
Before I share what happened next, I wanted to just pause to share the purpose of this article. Now I know you may be thinking this is a tale of woe and misery. But it does have a positive ending. I’ve chosen this experience to write about because it’s one I come across time and time again in the chronic illness community. I hope to encourage you to speak out the next time it happens to you…in whatever form it may take.
So, there I am stuck in hospital, exhausted but in too much pain to sleep. I was trusting the medical professionals around me to care for me and get to the bottom of what was going on.
Issue #1: You Can’t Still Be in Pain!
The first issue that cropped up was several nurses trying to tell me that the morphine MUST be stopping my pain. They questioned how I could possibly still be in agony while pumped full of IV morphine and slow release morphine. I couldn’t answer that; I just knew I was still in a lot of pain even with all these drugs in my system. My rheumatologist later told me he wasn’t surprised that morphine only just took the edge off the pain because it isn’t really designed for this type of pain. Sadly, there is currently no alternative.
Issue #2: Oops…
The second issue that cropped up was that the hospital delayed contacting my rheumatologist, despite my numerous requests because I knew he would know what to do. When they did eventually contact him and get his recommendation, which was steroid injections to try and get the inflammation causing the pain under control, they accidentally administered the injections twice! Thankfully it did me no harm, but it was far from reassuring.
Issue #3: A Ridiculous Diagnosis
The third, and perhaps most important issue, was when a junior doctor decided I didn’t have Rheumatoid Arthritis. Unknown to me at the time, she had checked my bloods. (My blood tests are different from many of those with RA because I am seronegative). Despite there being a wealth of information on file from my specialists, she decided she would interpret my bloods with no experience of autoimmune or inflammatory disease. She concluded that I didn’t have Rheumatoid Arthritis at all. What she did conclude was I must have simultaneously broken both ankles without realising. Go ahead, you can laugh. I did when I later found out because it was so utterly ridiculous. However, many of you with a chronic illness will know this type of experience is not unusual, which is no laughing matter.
At the time this junior doctor was “treating me,” I had no idea about any of the above. She lied and told me the Rheumatology department had requested x-rays of my ankles. I went along with this because it wasn’t unreasonable. I had the x-rays despite crying with pain trying to bend my feet into the correct position for the radiologist. The doctor later made a passing comment that my x-rays showed I hadn’t broken my ankles, which I thought was odd, but was too exhausted to think more about it.
The search for the cause of this crazy pain continued. Eventually I got so fed up, I called my rheumatologist from my hospital bed and got an emergency appointment with him the following day. It was only as I was being discharged that following day that a doctor came to apologise to me. I had no idea why she was apologising until she explained the junior doctor who requested the x-rays had been reprimanded for requesting them and for jumping to incorrect conclusions about my diagnosis.
Normally, I would have smiled and said it was fine and let it go, because I have the utmost respect for medical staff. They have an incredibly challenging job, and I understand all doctors must learn and knowledge comes with experience. But this time something stopped me, and I called the doctor back and asked if I could speak with her. I spoke more calmly than I felt when I told her that the care I had received in her hospital was well below the standard I expected. I highlighted several issues (some not included in this article) that I was unhappy with.
Most importantly, for the first time in five years, I then went on to tell her honestly how it feels when medical professionals don’t believe you or your pain levels and the damage that can do. It was an emotional conversation, but by the end I was so glad I had done it. A doctor heard, for perhaps the first time, how it feels to be a chronically ill patient and how much harm it can do when doctors don’t believe us. She appeared to take it on board and discussed action she would take to help other staff understand more about invisible illnesses and chronically ill patients. I hope it made some difference that I spoke up; it certainly helped me.
My rheumatologist worked out that the reason for me being so poorly was an infection, which had also caused a drop in my temperature and issues in my liver. The hospital had all this information, but because there wasn’t an obvious cause, it seemed easier to see me as a hypochondriac.
Your Voice Matters!
The point of writing this article was because I know so many of us with invisible or chronic illnesses regularly face doubt from so many people. It is incredibly hard when you feel those most qualified to help you don’t believe you. I want to encourage you to speak up about this. Doctors are humans, too, and we don’t need to fear them. They make mistakes and don’t know it all. They can learn from us as much as we can from them.
Working together with your doctors is vital to your mental health, as well as your physical health. Never be afraid to disagree with them, educate them, or be honest with them if their attitude is hurtful. In my experience, the best, most respected, and knowledgeable doctors are those who listen to and learn from their patients.
It is so important to be actively involved in your own treatment. You know your body best; don’t afraid to speak up when something concerns you. An honest conversation may just mean a better relationship between you and that doctor, or a better experience for a future patient.
Thanks for reading, and don’t forget: your voice matters.
About the Author:
Rachel is a 29-year old Chronic Illness blogger at www.whatapain.co.uk living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Rachel is passionate about challenging stereotypes and disability discrimination. She is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.