Third year medical student, Hisham Ghabra, sat down with Wessex Scene to discuss the impact of chronic pain on his life and how he has used his experience as a way to help others.
Could you describe what your physical health problem is and when it all began?
So the simplest way to explain it is I currently suffer from chronic pain. It started shortly after starting University of Edinburgh during my first degree when I was studying a BSc in Medical Sciences. I started noticing a dull pain in my knees which would come and go as time went on. After a while, I managed to see a GP, which then referred me to physiotherapy. This was a long waiting time and in the meantime all I was using was paracetamol and ibuprofen to help cope with the pain. I barely managed to see the physiotherapist before going back home at the end of my first year but I did get a chance just before I left for the summer and that is when the diagnosis limbo, as I like to call it, started.
Physio diagnosed me ‘patellofemoral syndrome‘ – that is to say that my pain was due to my knee caps not moving properly in my knee joint due to weak muscles around the knees. As a result I was given exercises to do, which did not help at all and at this point no one thought use X rays or MRIs to see if there was anything more to it.
After a while I ended up seeing an orthopaedic surgeon back home where I lived, and they did some scans and tests which slightly reconfirmed my initial diagnosis but also altered it to ‘chondromalacia patella‘ – damage to the cartilage behind the knee caps. From this I started on a more vigorous physiotherapy regime, including electrical stimulation of muscles to help them grow stronger. On the short term this did help but over time I returned to my old state and was suffering even worse pain.
The following summer I was taken to see another surgeon who suggested an operation on my right knee was the best way to go forward. I went along with this but again that did not help either.
Fast forward two years from my initial diagnosis after spending all of this time with pain, I finally ended up seeing a rheumatologist. They suspected I had rheumatoid arthritis which does not show up on blood tests, so my diagnosis was now different again and I started taking medication for that for a few months.
Then I was seen by another doctor who ended up diagnosing me with fibromyalgia and I was switched to new medication to treat that. Unfortunately the new medicine did not help either and I had to stop taking it due to bad side effects.
This last summer I had another rodeo of tests and scans because over the years by pain had started spreading, so not only did I have it in my knees, but also in my lower back, feet and ankles.
I was even found to have a small prolapse in my lower back, which means that some of my spinal nerves are compressed and from this my initial diagnosis of chondromalacia patellae was re-established. This chronic pain is now just something that I have to live with since it is a condition that is managed rather than cured.
How did you cope during all that time with the chronic pain and no certainty that your diagnosis was correct since it changed multiple times? It must have been difficult to see the light at the end of the tunnel when even the doctors were unsure about what was going on and how to improve it.
That’s an interesting question, it was a difficult journey and still is. A journey with chronic pain, especially when it is due to unknown causes, often begins with a lot of negative emotions such as frustration because you do not know what the reason is for the pain and anger because of how much it affects your life. For example, my ability to do physical activity has been greatly reduced by this and that cuts out a large portion of life.
You mentioned sport but is there other aspects of your life that has been changed?
Transportation is a big one as I cannot walk for long distances, so I always have to plan any work or studies around bus timetables and other transportation methods to get around Another thing is footwear. Due to some complications, I am no longer able to wear most types of shoes, including formal shoes. This meant that I had to speak to my faculty to get permission for wearing a different type of footwear than those required when on clinical placements. I am in a stage where there is constant pain, be it low or high. I wake up with it, I go to sleep with it. I am often searching for a seat whenever I enter a new room, in case I need to sit down and rest. As you can imagine, this changes the way I socialise with others. For example, I no longer do any physical activity events, but I do enjoy more relaxed events such as chatting or a movie. Even then, sitting down for too long is also painful, so I often fidget around in my seat to change positions or I might need a stand up and move around every now and then. It’s all about making readjustments to your life.
Did you have any techniques or routines to help you deal with the change in your circumstances and future plans?
Firstly and most importantly, my religion and faith. I am a Muslim, and the concept of trials, tests and how to react and conquer difficulties is a central theme and virtue in our religion. Patience really is a very strong virtue to have, and it is of great importance to my religion. In terms of medical tests and difficulties that I faced, while I had to be patient during all of this, I was also encouraged to seek medical treatment where possible alongside religious prayer, supplication, mindfulness and so forth.
Secondly, I found discussing things and educating others about my condition has helped me a lot. Which is one of the reasons I am doing this interview. In the past I have also shared my experience to my year group as a part of a lecture/symposium that we had on chronic pain, and I’ll be sharing this with younger groups this year. The ability to teach student medics about my experiences, and provide them with tips on things to do/say or not to do/say towards a patient with chronic pain is extremely rewarding.
It is truly refreshing to hear your viewpoint and how you’ve seen your condition as a trial to overcome and how you use this as a way to help others. What advice could you provide to our readers?
Sure, so here are a few dos/don’ts from my personal experience which of course is not necessarily applicable to everyone but it’s a rough guide I hope.
- Be supportive, understanding and adjustable with them.
- Ask questions where appropriate to understand things, but within limits of not being dismissive or minimising the importance/severity of something
- Ask about what they can or cannot do with you in terms of physical activity or other socializing events; not as a way of limiting them, but as a way of figuring out what you both can do together down the line.
- Disregard or trivialize the pain.
- If he/she says they cannot do something, do not push them to do it.
- Change the way you treat someone such that you know treat them like a fragile piece of glass that might shatter. We will tell you if we cannot do something.
- Completely isolate them. Yes, we might be limited in terms of some activities, BUT we still can do other stuff.
That’s some really good advice and it sounds like the overall point is to be open and have a conversation so everyone can be on the same page. Any last bit of advice?
It is not about the individual details in what the chronic pain is or caused by, but rather what we (people with chronic pain) want, in general, we want people to be more aware of it. Like mental health issues, chronic pain is often a hidden thing because you cannot see it. So be aware that it is a thing, and please be mindful of how you treat us. We are humans, just like you.