1) Introduce yourself – Who are you, where are you from and a bit about yourself.
My name is Catherine, I’m from Chester, UK and I run a blog called Chronicallycathy.
2) What illness/condition/disability do you have? When did your symptoms start? And what were they?
I have Fibromyalgia and Borderline Personality Disorder (BPD). I have suffered with both since I was a young child but was only diagnosed in the past two years. The first symptoms I had of Fibromyalgia were extreme pain especially in my feet, brain fog, trouble sleeping and stiffness.
3) What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously? Did it take a long time?
It was very hard to get a diagnosis. I first mentioned Fibromyalgia at my doctors practice when I was around 14 and I was told ‘oh no, you don’t want that’ and nothing else was said. I went on to see various other nurses/doctors at the same practice and they all just dismissed what I was saying. For a very long time I was back and forth to different counsellors and was told I had depression and social anxiety. It wasn’t until I saw another counsellor at 18 in the adult mental health service that I was told about BPD. This lady actually motivated me to go back to the doctors and push on getting a diagnosis for Fibromyalgia.
When I was 19 I had to leave a job working in hospitality due to it making my Fibromyalgia so much worse and it was really affecting my mental health. I have worked another job in an office since then and recently left there too. Every job I have done, Retail, Beauty, Hospitality and Administrative business has affected my Fibromyalgia and mental health to the point where I can’t keep ignoring it anymore and I have to leave work to get better. I am currently going through a process to see if I am capable for work.
After leaving my job in hospitality, I went back to see my GP and asked to see a Rheumatologist. He basically just kept repeating himself, telling me that it was all in my head and to go back to counselling and take SSRI antidepressants again. When I told him I don’t want to go down that route and I would like to see a Rheumatologist, he told me not to ‘knock it until you’ve tried it’ despite the fact I had spent the last seven years seeing many different counsellors and on and off antidepressants. In the end I started Fluoxetine again in return, as some strange deal, that I could be referred to the Rheumatology clinic. I was also given a sick note by this doctor where he only put ‘depression’ as the reason for not being fit for work. I had to beg him to put pain on there as that was the reason for the appointment. He put ‘depression and muscle pain’ in the end. The doctor also told me that those SSRI group of medications are all I would ever be given if I were diagnosed and he said my mental health is what was causing the pain. I’ve never seen this doctor again. After seeing a Rheumatologist and explaining my situation, he said I definitely have Fibromyalgia. I also saw a nurse at the same practice and have since tried Amytriptyline and Gabapentin after she told me that SSRI antidepressants being my only option was not true. The sick notes also now say ‘Fibromyalgia’ which really helped with explaining my illness to my previous work.
4) Had you heard of your illness/condition/disability before you were diagnosed?
I had heard of Fibromyalgia because my mum has had it for many decades and my uncle’s girlfriend and her daughter also have it. But I have also met many people who have no idea what it is. And many people who blatantly don’t believe in it.
I had never heard of BPD until It was mentioned by that counseller and have now researched it a lot.
5) How did you feel when you were told your diagnosis?
When I was told I had Fibromyalgia I was very relieved but at the same time I just felt like I had been told what I had always known anyway. I always told people I had it before I got diagnosed because I knew I definitely had it. I think this is the case for many people considering how long it takes to get diagnosed. In the time since then, it is easier at appointments when they see that Fibromyalgia is on my medical record and I dont have to explain to them that I suspect I have an illness that I haven’t been diagnosed with. But on the other hand I have also been with health professionals who have seen Fibromyalgia on my record and treated me negatively due to it.
6) What treatment did you have? Were there any problems? Did it help?
So far I have tried Amitryptline and I am now taking Gabapentin for Fibromyalgia pain. I also take Oxybutynin for Hyperhidrosis as it had been affecting me for as long as I can remember. The Gabapentin I take is still a starting dose, even though I have been taking it for a few months now, and I have told by my doctor it isn’t making any difference, not even slightly. But I am just being told to exercise more and have been referred for Cognitive Behavioural Therapy. I have many hospital and doctors appointments lined up so this may change.
7) Did family/friends/colleagues take it seriously? Did they support you?
I have lost many friends, their choice and mine, due to Fibromyalgia. A lot of people started treating me differently when I got sick and I have got rid of all the people who didn’t show me support and people who were blatantly rude due to my situation. For many years I kept friendships with people who didn’t care at all and I feel better now around people who love me and care for me and help me when times are difficult.
8) How does your illness/condition/disability affect your life?
Both Fibromyalgia and BPD affect my daily life. I have recently started using a walking stick to help me on short trips as my mobility has become worse. Unfortunately both my conditions counteract each other and it feels as though when my Fibromyalgia isn’t acting up my head is and vice versa. But I am hoping due to not working that I will be able to focus on myself and my health better.
9) What is something you wish people knew about it?
I wish people knew how much you actually struggle when you have a chronic illness. And that just getting out of bed and exercising doesn’t cure you ; sometimes it can even make your health worse. I wish people understood that when I am being what they think is lazy, I’m just resting and it is something I have to do. I don’t choose to restrict my life.
10) Anything else you’d like to share about it or your experience?
I’d just like to ask everyone if they can continue raising awareness for their chronic illness and doing their best to help themselves get better.
And I can’t stress enough how being around people who are not judgemental about my illnesses has positively impacted my life. Being around people who bring you down is ultimately going to ruin you and you don’t have to stand for it.
You can follow Catherine’s journey over on Instagram: @chronicallycathy
