*quite a long read, sorry It’s harder to summarise life events than I thought!*
I’t”s certainly taken me some time to start writing about chronic pain and the experience that led up to it. Maybe because even now, after a couple of years have passed and I am managing this condition I am still in denial. Something inside of me wants to think this is temporary, after all, who wants to think that they spend the rest of their life somewhat impaired, less able and in pain?
I was 18 years old when I started to develop pain in my wrists, mainly when writing or using the computer, this made me suspicious of an overuse injury like (RSI), but after advice from doctors just take painkillers and not think about it much the pain began to reduce significantly and I became less concerned. A few weeks later I noticed a returning in symptoms which I tried to tackle from every angle; splinting, stretching, abstaining from any technology usage (which is close to impossible in this day and age) to try and remedy the pain, with limited success.
Over the next couple of months things worsened, as I started my second year of university my health began to deteriorate, I was unable to write, hold objects, or complete ordinary activities with my hands without pain or my thumbs dislocating, I had developed back pain making sitting or standing for any period of time painful, my shoulders would dislocate when lying down and my arms would ache. Doctors in my university city were unable to provide an explanation and now standard painkillers such as paracetamol or ibuprofen were ineffective. There seemed to be no other choice but to leave my studies and later embark on a very difficult journey to finding specialist who could provide a diagnosis.
Leaving university was not a simple process, with the university holding a strict procedure regarding taking time off for medical reasons. Without sufficient medical evidence that met their requirements I was unable to take time off. Unfortunately, I had the displeasure of meeting one of the most arrogant general practitioners that would later be included in the long line of rude, arrogant, middle-class male doctors. This doctor was an affiliate of my university, who managed the medical evidence and permission for medical leaves of absence for students at my university. After consulting with me a few times he was dissatisfied that anything was wrong seeing as he had referred me to specialists who only found slight hypermobility and no other reason for the severity of my symptoms. Therefore my doctor was adamant that this was not a good enough medical reason to be allowed to leave university and suggested that the only solution was to immediately put me on antidepressants, due to my low mood combined with moderate pain killers.
In my mind, University was such a financial and academic investment was extremely reluctant to drug myself up and take a smash my penultimate year to just see how it went, so I refused to take that plan of action. Instead I insisted that the only reason for my low mood was the pain I was experiencing. If the doctors at this university hospital were unable to figure out what was wrong with me I would go back to my home and seek out medical treatment there. A long battle commenced between my university wanting more evidence and my general practitioner unwilling to provide any, I eventually convinced my general practitioner to permit a leave of absence shamelessly threatening to withdraw from the University completely. Eventually he relented and I could go home , that is after struggling through the first semester which comprised of a living situation with a bully roommate, a blossoming drinking problem, extreme weight loss and non-existent grades.
Once returning home, a place where none of my family resides during the school term, (my parents working abroad and my sister in a different city) the reality of my situation soon set in and my only concern was to find a doctor who could figure out what was wrong with me, fix it and go back to university. With six months to do this, I had no idea that the months that followed were probably going to be the darkest months of my life.Once settled back home, endless visits to the doctor commenced, and seemed to fuel more negative emotions than my present health condition.
I began to realise that although doctors are just human, they could be very crappy ones with very little to offer. Of course, this was not because they could not figure out what was wrong with me, there’s only so much textbook knowledge one can learn, but instead, it was how they felt that they had the right to belittle me, behaving in a dismissive and arrogant way, suggesting if their colleagues could not figure it out then it was clear a problem did not exist. Making me feel like a time waster, a nutcase and at one point, leaving me to have a crying meltdown hunched over in a ball in one unsuspecting physiotherapists office. Its not a surprise that I began to feel more depressed about going health appointments then I did about my condition which was during this time,worsening.
In the meantime, similar symptoms of pain, stiffness and aching were developing in my feet, knees and pelvis. I would spend days lying in bed with ice on my feet to reduce inflammation, or my hands soaking in hot water, bandaging my wrist and sometimes my toes to prevent movement, reading, watching TV, trying my best to heal myself, to heal my mind, trying to convince myself it would get better, but things were not improving.
As the months passed, it’s fair to say my mental health was deteriorating just as rapidly as my mental health, the days and nights were scattered with breakdowns, 3 AM panic attacks spent talking to strangers on suicide helplines, appointments at crisis centres when I couldn’t find the will to keep going and an eventful trip to the emergency room resulting from an intoxicated phone call to somebody who I was no longer friends with but who felt obliged to send police to my house informed I was going to commit suicide. In the midst of all this however I persisted with the doctors and eventually landed an appointment with a rheumatologist. (A specialist for joint health). After an evaluation I was diagnosed me with hypermobility syndrome. Initially, this was not very comforting to me after hearing a similar opinion from other practitioners but after being given information about the condition things began to seem a little clearer, although I don’t think I ever fully accepted diagnosis it still pleased me to have medical evidence to take back my university.
During this six month period, I often spent the weekdays doing gentle swimming, a recommendation by very arrogant yet helpful physiotherapist, which unfortunately happened to be the only helpful advice that I received from any other physiotherapy service on the National Health Service (NHS). I received no treatment despite being referred by the rheumatologist to the physiotherapist….for treatment. The physiotherapists I saw seemed to be very open about not having anything to offer me. Doctors also proved very unhelpful insisting the only answers were drugs. So I took myself to the swimming pool three times a week alongside doing yoga every day, hurting myself a lot of the time in the process but just having to adjust and readjust until I found yoga helped a lot, although not recommended for hyper mobile people was something that helped me become less tense, moving more and temporarily pain free. (Shout out to yoga with Adrienne!)
M physical condition did improve, enough to where I felt going back to university would not be impossible, and with the sufficient medical evidence, the school allowed me access to disability services and as thankful as I was for the support, it is still a word I am not ready to face. I restarted my second year of University, and went to visit my GP as I was still in correspondence with him during the leave of absence. I had not seen him in over six months and was slightly anxious as to how he would receive me now been diagnosed, given a fit to work letter and having access to the disability service at the University. Call me naive but I was hoping for a slightly warmer welcome than what I received.
Upon being called to his office, I was met with no eye contact and asked how I could be helped. I told him that I now was feeling significantly better, had access to the disability service and my own care plan set up with the university, a diagnosis, and that I would now want to continue seeking treatment for here in this city and begin managing my healthcare at the surgery to which he retorted, “disability services were not setting students up for the real world”, that there was discrepancies with my diagnosis, and that he was unable to provide any treatment options for my diagnosis and that I should know it was lifelong. I soon saw the negative and spiteful direction that my general practitioner with the appointment and admittedly became shocked and hurt though I should have hardly expected better. I began to object to some of the points he was making which was met by a hand raised up to silence me. That day I walked out of his office and never returned.
Even though I was aware that his negativity was just spitefulness, I remember going to bed that night feeling my heart continuously racing, for weeks, day and night I felt my heart beating so fast it was as if I could not breathe. Eventually it settled and my heart rate returned to normal. Over time I found a new general practitioner at the same surgery that I was able to communicate very well with, a true blessing considering even walking into hospitals or doctors surgery provokes anxiety.
Fast forward almost 3 years, yes I still have painful symptoms in my primarily in my hands and in other areas of my body, but I’ve gone weeks without pain followed by sudden return. I often think to myself, If I had no pain, I wouldn’t suffer from depression or anxiety. Thats a nice thought but unfortunately not backed up by evidence, I know that even when the pain is less noticeable, I still feel depressed and anxious and often wonder why even without the debilitating physical symptoms I feel this way. The depression and anxiety is just as debilitating as my physical health in its worse condition. It was somewhere during this time period I decided to go on antidepressants. Not because I felt forced or coerced to as I did by my first doctor, but because I knew that something out of my control, routed deep within my brain was sick and in need of help.
I find that every day I keep questioning if it is worth living if I can’t live fully, the way I did for most of my childhood and early adolescent life. Every day I find myself having to fight off some of the strongest suicidal urges I’ve ever felt. Every day is a battle, and I keep thinking, what is a university degree without my health? What are my employability prospects with a disability? Will I be able to have a family? Take care of my children and live a normal life? Why did I cause the onset of hyper mobility syndrome by not taking care of myself? Yes so many questions sometimes the uncertainty of it all makes it difficult for me to stay alive. I’ts like being in survival mode, living with depression, so now I write, and it helps.
Thank you so very much if you ended up reading this, I appreciate your support of this blog