This letter was recently printed in the Irish Medical Times and tells you Annette’s story.
Title: Please Don’t Stigmatise
Dear Editor
I never expected to have to retire early but I had no choice. I developed neuropathic pain from pelvic adhesions due to endometriosis. The pain was like a knife in my right groin, piercing all the way down deep into my pelvic floor. I couldn’t lift my right leg, so walking was a challenge. But I was very lucky to end up under the great care of Dr. Paul Murphy, Pain Consultant, St. Vincent’s Hospital, Dublin. After three years of complicated trials, Dr. Murphy succeeded in finding something that helped. It was then that I started what has now become a long-standing pain management treatment.
I have been on daily methadone for 11 years now. I get my prescription every month from my GP and I then have to take it to a pharmacy that agrees to fill this prescription. I am not charged for the methadone. The pharmacist claims their fee from the HSE. It is all very tightly controlled and monitored, with precise attention to exact dates and dosage. I am relying on having a GP that agrees to take me on as a patient and is certified to write a methadone prescription, and I am relying on a pharmacy to agree to stock it for me. This all works fine, until I have to move to a new area. I then have to start all over again to find a GP and pharmacy who will agree to take me on as a patient.
When I first started taking methadone, I had no idea of what I was going to have to deal with from medical colleagues and allied health professionals. Here are a few examples of what I have had to deal with:
Medical Colleagues
- I was moving house and I rang a GP in the new area asking if I could join their patient list. I explained I was on methadone for neuropathic pain. Their reply was ‘I am not dealing with that shit’ and they banged down the phone.
- I was moving house again and I had to find another GP. When I told this GP that I was on methadone for neuropathic pain, they asked me ‘Did you raid your medical bag?’
- I was in a consultation, telling a surgical consultant that I was on methadone for neuropathic pain. Their response was ‘You’re down to the dregs if you’re taking that stuff.’
- I was in a consultation with a medical consultant. When I told them I was on methadone for neuropathic pain, they asked me ‘What centre are you attending for your drug rehab?’
Nursing Staff
- I was an in-patient. On admission, I was asked by one of the nurses ‘Does the methadone help your cravings?’
- I was an in-patient again, in another hospital. One of the nurses said to me ‘We don’t like dealing with your type here.’
Reception Staff in GP Surgeries
- I was checking in at a reception, saying I was there to collect my methadone prescription from the GP. This is what was said to me ‘You’re looking for methadone? You’ll have to wait outside. I’ll call you when I can.’ I was left standing outside for 1 hour and fifteen minutes.
- I was checking in again, in another practice. I said I was there to collect my methadone prescription from the GP. This is what was said to me ‘What is it with people like you? You just have no self-control.’
In all the above, I did not stand up for myself. I already felt I was a problem patient and I did not want to inflame the situation.
Adding Fuel To The Fire
There are two other factors to consider when it comes to chronic pain patients on long-term opiates. Patients on long-term opiates develop opiate tolerance. They can also develop hyperalgesia. So, for example, a chronic pain patient undergoing major surgery will likely need a higher dose of post-op opiates because they have opiate tolerance and they will likely experience more post-op pain due to the hyperalgesia.
I had major surgery not long ago. I was already feeling insecure as I was on methadone, so can you imagine how uncomfortable I felt having to explain I would probably need a higher post-op opiate dose? Can you imagine how frightened I was that I would be judged as a person who abuses opiates? I even brought a clinical research paper on opiate tolerance and hyperalgesia to prove to all that I wasn’t doing this. I desperately wanted everyone to understand that I genuinely might need a higher post-op opiate dose. In this instance, the surgeon and anaesthetist were fantastic. They understood my situation and prescribed accordingly. It was wonderful not to be judged or stigmatised.
In my experience, there is a terrible stigma around methadone. Some people hear the word ‘methadone’ and they assume they are dealing with a drug addict. Sadly, this can result in patients having to deal with unacceptable attitudes. I have encountered this far too often and it has left me feeling dismissed, degraded, humiliated and shamed. I feel for drug addicts who are taking methadone. Their self-confidence is probably at an all-time low. If they have to deal with these attitudes, like I have, this certainly won’t help their well-being and rehabilitation.
