I was asked to be a contributor in an educational film to present to medical professionals by Troy Holmes and Hannah Ware who were collaborating on a chronic illness educational film for the University of Cambridge. Unfortunately, my health got worse and I am attending the hospital multiple times a week at the moment.
I am not sure if I can still do this also due to starting my industrial placement. However, I thought I would post the type of things I would of mentioned in the video and the amazing work I am sure these guys will still produce (with or without me). This post will mainly inform you a bit more on how Ehlers Danlos syndrome affects me a brief insight into my Borderline Personality Disorder.
1.If you could just tell us a little bit about who you are and what’s important to you?
I am Morgan 25 years old and studying Business & Management at Oxford Brookes University. I have various mental and physical illnesses and learning difficulties that makes me see the world a bit different from a lot of people.
I have been diagnosed with Ehlers Danlos III which is a collagen defect and causes me on the surface to have soft velvety skin and be super hyper-mobile but fragile. There is a dark side to this illness as I suffer from continuous dislocations, low blood pressure, vitamin d insufficiency, photo-sensitivity, bruises, chronic fatigue and pain.
I have recently just recovered from a broken ankle. I also have too many mast cells and I am histamine intolerant which also means when I eat it attacks my bladder and I am currently undergoing bladder instillations for chronic bladder syndrome. The latest is I am due to start H1 and H2 blockers under the wonderful care of Professor Kullar to try and get this under control due to multiple food allergies.
My physical health has impacted my mental health and I have borderline personality disorder and clinical depression. I have gone through manic stages in the past trying to kill myself. I find it very difficult to sustain long term friendships and relationships. I tend to see myself as a professional patient – as I spend my life in and out of hospitals.
It is important for me to have good quality friendships over quantity and to keep engaging my brain to keep away from negative thoughts. My moods can still rapidly change even though now I am on quetiapine and sertraline. I find it hard to make new friends going to social events is important to me and so is my father who knows the extent of past substance abuse. I also enjoy listening to music, blogging, making art and cuddling my pet rabbits to calm down.
2.If you were to describe yourself to someone what might be a key characteristic?
I am a perfectionist, which is great for attention to detail but not so good under time constraints.
3.Thinking about your life, what were the defining moments or things that stand out for you?
The first time I picked up clay was interesting because I found this new found love for three dimensional art. Other times include passing my second year of University on a 1st, finding an industrial placement in the area I want to work in and working abroad in Spain teaching English to a private family.
4.So thinking about your life day to day, what kind of fills your day, what’s a typical week for you?
To be honest with a chronic illness there is no typical week!
Although… I tend to wake up in the morning fighting with myself to wake up with a tension headache looking for paracetamol, water and coca cola to give me a slight boost to get up. I feel my joints ache as I trail to the bus stop and smoke two cigarettes before I can go into work. My days feel very up and down in energy and before this job (the first one I have had in years) I use to have to sleep multiple times a day. Having Ehlers Danlos syndrome feels like when you hold a heavy bag for too long, but in this case it’s your body.
I spend a lot of time with my head to one side, sitting in my coat indoors and taking hot baths and showers to numb pain. I dread eating because I know it will trigger off my allergies and attack my bladder making me want to sleep. If the pain is bad, my mood can heighten and I can become more irritable and show outbursts of anger even on medication. I have to visit different hospitals weekly to keep me away from the operating table.
I am paranoid that people are going to mug me, laugh about me, hurt me or abandon me. I don’t have many friends at all in Oxford so I tend to avoid being there at the weekends, but don’t have the best relationship with the rest of my family either.
5.What’s it like to feel like you don’t have a standard day?
When a super flare hits I can’t do anything, wash, eat, sometimes even sleep. It is catch 22 I never woke up early enough to call the doctor at 8.30am and if I did then I didn’t have the energy to get to the doctors and back or the money for taxis. When I have left flares so bad on many occasions I have ended up hospitalised for a few days. Some days I can do much but I put make up on to feel better and well the days I can finally go out I am very thankful for – as these aren’t standard days either!
6.Do you worry about people asking you what you do? And where does the conversation go if you do talk about your illness?
I find it much harder to meet new guys and discuss what I do and my illness. My ex-boyfriend appeared understanding of my physical health but wasn’t aware of my mental health issues, which is one of the reasons that caused it to die out. I think it is a bit of a turn off and it’s hard to see even friends or date regularly when you don’t feel amazing.
I find having invisible illnesses is hard, especially when you need to sit down and no one will offer a seat on public transport or you have to tackle 100 stairs because there is no lift and debating if you will break something in the process. Although, since I have gone to University and now doing a placement year I don’t worry as much as I know I working towards bettering myself.
The conversation can go many ways about my illnesses, people being curious and wanting to know more, people misunderstanding what my illnesses are and the side effects, people not caring about my illnesses and not wanting to talk to me and people wanting me to help promote products through reviews etc. People see that I am going out some weekends, so I look better but they don’t realise how many days it takes me to recover from going out. I am thankful for my best friend Ellen who has been there for me when a lot of people haven’t.
7.So you mentioned Borderline Personality Disorder and Ehlers Danlos syndrome the effect it’s had on your life, can you tell us a bit more about that and your experience with it?
Borderline personality disorder is also known as emotionally unstable personality disorder, where a person can’t regulate emotions properly. It really is a whirlwind of emotions or in fact no emotions. You want to be close to someone but you get so scared they will leave you, in my case well they eventually do.
I see others peoples point of views and heartache but I can’t seem to empathise with them and I to an extent I have OCD. I am always checking I have my phone, sometimes self-harming areas of my body, fear failure, anxious to try new things, social anxiety, lost identity and sometimes can be the opposite and to cling. I feel sad about 75% of the time and I use to not leave my house unless I was drunk, up until a couple of months ago. I can’t expect other people to understand me because I don’t understand or love myself properly.
Life is quite hard not having a good relationship with my brothers or mother but I just have to try and focus on doing something to keep my moods stable. I find people or memories are the biggest trigger to my manic stages but I couldn’t pinpoint on exact memory or person that gets me back into the black hole.
My experience with it is I understand people who are ill better I find my split personality hard to maintain bonds with people. When I am mentally feeling better, I then have to battle with my physical health and my joints to do an activity. I know if I go out for 1 day I will be recovering for 4 days at least after which makes me feel like I am watching my life go by. At 25 years old I am already struggling to walk as my knees are giving way and could be in a wheelchair in a few years. I also will have to start wearing permanent splints soon because my knees can’t support the weight of my ankles… So I want to see some countries when I have some money to have some nice memories to look back on.
8.How old were you when you found out?
I didn’t get officially diagnosed with BPD until was 25 but there was evidence of symptoms since 2011, when I was also diagnosed with clinical depression. I got diagnosed with Ehlers Danlos syndrome in when I was 23 years old by a private rheumatologist. My mast cell problem and chronic bladder disease was discovered when I was 24 years old.
9.What was your experience with medical professionals and what’s your interaction been like with GPs and nurses?
Most the issues I have had with medical professionals lay with GPS. I got told for many years the pain was mental pain from depression when I knew I was in extreme pain and why I saw a rheumatologist privately.
I found it irritating that when a specialist consultant decides not to practice on the NHS anymore you are not informed and have to start the referral program with another one again. GPS tend to just try to solve the immediate symptoms and gave me a lot of anti-biotics which I did not need causing more damage. I have found nurses in hospital for my physical conditions very good and in mental health most are good but you do get a few bad eggs. The worse situation I had was when I was asked by a nurse, if I was the result of incest due to having so many health problems.
I have had relatively good medical professionals at Stanmore Hospital, St Marys Hospital, Churchill Hospital, The National Hospital for Neurology for Neuroscience, Stoke Mandeville Hospital okay overall with a few incidents. The problem I have is every specialist who sees me thinks there are additional issues such as Pots, fibromyalgia, Chrones and Celiac disease which causes for more testing some I have done been able to do yet. I feel I have been listened more since my EDS diagnosis but many GPS don’t know what this is.
10.What tends to happen in those situations?
If I see my GP I tend to have to explain what EDS is and why I need a different amount of general aesthetic in hospitals. Due to my BPD it can end in me walking out, getting angry when I am not listened to or given pain relief and feeling like I have wasted my time as travelling to hospitals cost a lot of money. At an initial appointment with a new specialist, I usually take someone with me who can diffuse the situation or keep me calm.
11.Do you think that EDS or BPD has impacted your life and who you are as a person?
These conditions have impacted both really. Being ill has showed me the people who really care about me and although I can’t be an artist due to the constant joint pain. I have realised I am good at studying other things like Business and Spanish. It is unlikely I could every waitress again. In a nutshell having chronic illnesses tend to affect how I plan my life moving forward and being adaptable to change.
12. Where do you kind of feel that you fit in within disability discussions? How do you identify yourself? Do you engage with that?
I think in support groups I fit in with discussions as other people have illnesses. Although, even in the chronic illness community – some people view it as a competition, so I don’t engage in some discussions.
University view me disabled but I still have to apply for mitigating circumstances like everyone else. It is just more likely mine will be approved as I have a lot of evidence from doctors. I still did not do an uncap resit I didn’t do my best in because I wasn’t mentally feeling up to it at the time.
My employer does not view me as disabled but they make allowances for me to visit my doctors which I am to make up in lieu. My employer also understands I may take longer in completing some tasks on some days. I am very grateful for this and their understanding, otherwise I wouldn’t be able to do the placement stated by my doctors.
13.What kind of, terminology do you use to describe yourself? What about chronic illness?
- Zebra (Shows that everything isn’t just black & white)
- Chronic life
- Invisible Illness Warrior
14.When you think about yourself and your identity, how big a factor it is kind of EDS and BPD in who you are or do you see it as being quite separate?
A big part of BPD is having a lost identity. I feel as I have got more ill I miss the old me and old hobbies… and I have got uglier. However, a part of the condition is it being described as being a part of my baseline personality opposed to bipolar where the episodes are seen separately. I have to agree that my personality or what I know of it is this condition.
With my EDS I try to make out to other people it is quite separate and I am not my disability…as other conditions have worsened stemming from EDS like chronic bladder syndrome and mast cell problems I have very limited energy and it does mean my hobbies and social life naturally had to change.
15. How does it, based on what you just said, how do you have resilience and well-being in yourself?
I know that sometimes I don’t look after myself properly. I eat things that are bad for me if I am very depressed or in a rush but this is still quite minimal. Nevertheless, I drink a lot of caffeine and smoke a lot of cigarettes to be able to function in the day,. I tend to replace one substance with another, which I need to work on. I do think that I am resilient in the sense of moving forward with my days now and getting up in the mornings.
16.Which support and what would help you work? What were those situations like for you?
Searching for an industrial placement was extremely difficult because I am not very good at the online tests to get an interview. I am fortunate enough that my employer is giving me the support I need at present.
18. When you’re talking to other people when they have a stake in your life, like an employer, what do you feel their perceptions of you are in the what’s the understanding like?
I think my employer understanding that I am unwell is good and I try to explain some of the things wrong with me but some issues I have like mast cell issues are quite hard to understand for someone who has never heard of it! So I try to disclose the appointments I have and anything relevant like if I am to start new medication which may affect my work. Although, to know what they really think you would probably have to ask them.
19. Do you think EDS or BPD has had an impact of any relationships with family members or friends outside of work?
I think that BPD affects my relationships with family and friends outside of work more than anything else because controlling my mood swings and anger outburtsts are hard work when anything can trigger me. Although, from time to time I make plans but can’t do them due to physical pain and I lose out of money to buying tickets in advance.
20. As a young person, with social media and all of those things, where do you see yourself as a young person with this generation?
I am not really sure where I see myself in this generation. Although, I can see that digital is definitely the way forward to get readers for my blog and other things. It is just unfortunate that there are so many trolls on the internet that do not know the impact of the nasty things they say!
If you are still here, thank you for getting to know me & for reading.
Lots of Love,
Sharing is Caring
I would love if you shared this post to raise awareness of invisible illnesses.
Have your Say…
Do you suffer from a physical or mental illness or know any one who has?
Like what you see?
Join me on my health journey on social media;