This week is RD Blog Week 2018. The RD stands for Rheumatic Disease, because Rheumatic Disease is so much more than arthritis or joint pain. I am really excited to be part of it and each day for the next week I will be writing a blog based on prompts given. Today’s prompt is “The Medicine” and it’s all about what autoimmune patients experience when asking for prescription pain medication. The fact is patients with invisible illnesses are often not treated very well by doctors and pharmacists when they request pain relief. I am fortunate to have an amazing Rheumatologist and Pharmacist but not so fortunate on the General Practitioner (GP) front. Today I want to share with you what happened to me the last time I asked my doctor for stronger pain relief. It is isn’t pleasant but sadly it seems to be the norm.
One of the first articles I wrote on What a Pain was called ‘A Comedy of Errors’. It detailed what happened during my last serious flare and the mistakes the hospital staff made while I was in their care. What I didn’t share in this was what happened to me before I was admitted to hospital.
In June this year I became seriously unwell with what was later to determined to be an infection which caused a reactive flare up of my Rheumatoid Arthritis and had a knock-on effect on my liver, among other things. One afternoon I went from feeling my version of ‘well’ to feeling worryingly unwell in a matter of hours. I am used to feeling unwell, but on this occasion, something just didn’t feel right. When you live with a Chronic Illness you become pretty in tune with your body and I always tell my husband not to worry unless I’m worried. On this day I was pretty worried, and I couldn’t even minimise the severity of my symptoms like I so often do. This flare up was like nothing I’d ever experienced before, and the pain was off the scale. So, I reached out to my GP to get an emergency appointment but failed to get past a particularly obstructive receptionist. She dismissed me entirely and I did not have the energy to fight so I accepted her dismissal and put down the phone.
Several hours later my symptoms had grown worse and I was becoming scared. So, I called my GP practice back and told them I urgently needed to be seen. I explained my condition, the medications I was taking and the symptoms I was experiencing but still they refused to give me an appointment. I refused to back down and told them I needed a blood test urgently and that a doctor needed to call me back. I knew I was in trouble and I needed help. Eventually the receptionist told me she would get a doctor to call me but by the time that phone call came the pain I was in was indescribable. I explained to the doctor all of the above and I explained how my various medications can cause issues, how my immune system being suppressed by medication means I am more susceptible to infections and how the pain I was in was unbearable. She refused to see me, and I genuinely thought that she was joking. I was told I had to wait until the morning, and at that point I knew I wasn’t going to manage the night with just my usual pain medication. I requested she prescribe Tramadol, which I have had plenty of times in the past for bad flare ups. I usually take opiate-based medication of a lower dose as part of my pain management, but I had completely run out of anything stronger than codeine, so I requested that she prescribe Tramadol so I could at least try and make it through the night.
Very rarely have I requested strong pain medication, I actually request the lowest dose of my repeat prescription codeine so that I can take the bare minimum needed to cope. I do this because my tolerance to pain relief will grow over time and I have a lot of years ahead of me, so I don’t want to use up all my options within a short period of time. It means I suffer with high pain more than I probably need to, but it also means when I have extreme pain I have something to fall back on.
I didn’t think twice about requesting stronger pain medication because I have done it in the past and generally my medical team know that I only ask if I am really in need. This doctor didn’t even bother to check my file, despite me asking her to, she point blank refused. Then came the torrent of absolute crap that we keep hearing about in the news. The whole speech about how “we don’t like to prescribe opiate based painkillers anymore, and we don’t do it anymore”. It was news to me, I wasn’t aware of any law change which prevented her from doing her job. I also wasn’t aware of any other magical new painkillers they were offering instead. That is because there aren’t any. What a wonderful moment for the medical profession, a doctor who took an oath to help was listening to me sobbing down the phone, begging for help, for some simple relief if they were really going to make me wait until the morning for blood tests, and all she could do was say no. She couldn’t answer me when I asked what else she could do for me, because truth be told she knew she was in the wrong. I tried to reason with her, I was so angry, but I desperately tried to be reasonable. That is not easy when you are in all consuming agony let me tell you! What she had the audacity to say to me next, I’ll admit hurt almost as much as my joints did in that moment. She said, “we only prescribe it for people with cancer, and the level of pain they’re in”.
I do not doubt for a second that cancer is one of the most horrific, traumatic, agonising things someone can go through, mentally and physically. I have watched too many people I love fight cancer, and many of them lose that battle as well. However, I don’t think anyone has the right to tell me that my pain doesn’t matter because it isn’t caused by cancer. I don’t think someone who has never experienced the pain I live with every day because of an incurable, life long illness, should tell me that my pain is less than someone else’s because it has a different name.
The fact is how can someone compare the two? I thank God I haven’t lived with both, so I don’t know if one is more painful than the other. But why on Earth would I want to make that comparison in the first place? It is not okay to compare diseases, to rank them, to say one is worse or better than the other. It doesn’t help anyone, and it can be deeply harmful. Medical professionals, above anyone, should not be doing this and should know the harm it can cause. I was denied pain relief I very much needed, and deserved, because I didn’t have cancer. How on earth does that make sense to anyone?
Shortly after that phone call my GP called back and offered to prescribe a few Tramadol tablets to get me “through the night” if my husband drove to collect the prescription immediately as they were closing in a few minutes. My husband arrived to find the door locked and an extremely rude receptionist telling him he was “late”. He had driven as fast as he legally could to get there, and my doctors’ surgery is only a 10-minute drive away.
It was too late any way, by the time I got the Tramadol I had deteriorated further, and I knew I needed a blood test that night, not in the morning. I contacted an out of hours service who told me I needed to get to a hospital immediately. They were right, I was admitted to hospital that night and they spent a week trying to get my pain under control. I wasn’t given Tramadol in hospital, I was put on an intravenous drip and pumped full of Morphine. It took a week to get it under control, and even when I was discharged I was still on slow release morphine and oral morph. It took me around three months to recover from the infection and the reactive flare it caused. I had to have steroids injected into my ankles, so I could stop using a wheelchair and walk again. I am still not as well as I was before this all happened.
Being prescribed Tramadol wouldn’t have prevented this but being listened to and treated with respect by my GP would have meant things happened a lot faster in terms of getting me the correct treatment. What angers me about it, is that if I had listened to her dismissal and not contacted the out of hours centre, things may have been a lot worse by morning. It is experiences like this that put me off contacting my GP for help. If I am concerned from now on I will go straight to my Rheumatologist’s secretary and request an urgent appointment, which they are always happy to arrange. I won’t go to my GP for my flu jab, I’ll go to my pharmacist instead. I’ll be making every effort to avoid being made to feel like a liar, a fake and a drama queen ever again, even if that means coping with more than I should. That isn’t okay, and I believe Chronically Ill patients deserve so much more respect than we often get. However, until doctors start listening to us, and respecting us, I can’t see anything changing.
My GP called me while I was in hospital to ask why I didn’t come in for my blood tests. I suspect deep down she realised she had behaved badly towards me and wanted to cover herself by following it up. She was shocked, to say the least, when I told her I was currently in hospital hooked up to a morphine drip, and she tried to apologise. She said she’d see me as soon as I was out, but I told her I’d be seeing my Rheumatologist who understood my condition. I may sound unreasonable, but this isn’t the first time I have been treated this way. It is hard not to be angry about it because it makes an already difficult situation, living with a Chronic Illness, even more difficult and it is totally avoidable. I am a big believer of forgive and forget, and with time I will forgive that doctor, but I don’t think I’ll ever be able to forget how it felt to be so scared, in so much pain I thought I was dying and be denied any help.